December 31 - Dear Nicholas Sparks

Dear Mr. Sparks,

365 letters to you, a few book signing visits, 2 photos with you and a whole lot of prayers.   You haven't had my face and name plastered on warning posters for security.   You have graciously listened to me, asked me questions and seem genuinely interested in these children.   Most importantly, you have not said that dreaded word "no".

Thank you for humoring me.  Thank you for considering helping these children.  20 years and my voice just isn't loud enough.   In the year that we have been writing you, 1600 more babies were born with Congenital Diaphragmatic Hernia just in the United States alone.   800 of those children did not survive.

Every single phone call from a new parent, every heartbreaking message that a little one lost the fight and every prayer for each of these families included a hope that some day, someone will care enough to speak up for these babies.  

I'm not sure why it was laid upon my heart to start this project or why you were the person who I was led to seek on behalf of these children.  But I hope that this quest ends happily ever after.  I hope that you will write the ending of this story.  I pray that you will give these cherubs a voice.  

Thank you for allowing us to dream and to hope.  And that you for all your kindness along this journey.

Sincerely,

Dawn M. Torrence (Williamson) Ireland

CHERUBS President & Founder

Shane's mom

December 30 - Dear Nicholas Sparks (Guest Blogger Kate Langford)

Dear Mr. Sparks,

In August 2002 I underwent a menstrual cycle observation at the University College Hospital fertility clinic in London. I had been diagnosed with poly-cystic ovary syndrome (PCOS) and I wanted to find out the extent of the illness and whether or not I would be able to conceive naturally when I decided I wanted children. I was 28 and I knew that I wanted to have children at some point in the future. The menstrual cycle observation was amazing and I had internal scans weekly to see if and when I ovulated and I saw pictures of the egg as it moved from my ovary down the fallopian tube. As the fertility clinic wanted to give us a full picture of our fertility as a couple, we were asked to have unprotected intercourse on a specific night and a sample of mucus was taken the next day to tell us how ‘compatible’ we were as a couple. The results weren’t great - although I did ovulate normally despite the PCOS, my bodily fluids seemed to kill off my husband’s sperm and we were told that if we wanted to conceive then we would have to consider artificial insemination.

I thought no more about it for two weeks; this was something that we would just have to contend with when the time was right. Then I woke up one morning and was sick. Sick in a way that I’ve not been sick before – not ‘ill sick’ but ‘nauseous sick’ and I just knew I was pregnant even though we’d been told it was practically impossible. I bought a test later that day and it confirmed my suspicions. I think I did about 6 more tests before I believed it! I wasn’t unhappy about it but just wasn’t expecting it and it took me a couple of weeks to even get my head round the idea of having a baby right now.

I had a scan at 6 weeks as a follow-on from the fertility test and there was a little broad bean with a heartbeat – it was amazing. The 13 week scan was great too as there was this tiny human, it was so hard to believe it was real. We had the 20 week scan just after Christmas and it brought a bombshell. The sonographer told us that we were having a boy but that his heart was in the wrong place and we would need to see a specialist from the Fetal Medicine Unit (FMU). This was a Thursday and the earliest that the FMU could see us was the following Tuesday so we had an agonising weekend with our imaginations flying everywhere.

We saw a consultant at the FMU who after careful scanning told us that our baby had a condition called CCAM – congenital cystic adenomatoid malformation of the lung – which meant that he had cysts growing in his left lung which was squashing the right lung and pressing his heart over to the right of his chest cavity. He said that the baby could develop lots of pre-natal problems but might go to full term and would require an immediate operation to remove the cysts. He said that the baby had about 40-50% chance of survival and gave us the option to terminate.

We didn’t even consider termination and so booked in for regular scans at UCH to see how he progressed. The scans became something of an event as CCAM is so rare and we had professors and consultants from Great Ormond Street Hospital, Kings College and a whole range of other doctors from UCH in the room to have a look at the scans. They also considered another diagnosis of congenital diaphragmatic hernia but at every scan they checked the diaphragm and it looked solid so this was discounted.

We were prepared for our baby’s stay in NICU and had tours of UCH’s neo-natal Unit and GOSH, where the baby would have his operation.

Meanwhile the pregnancy went well and we had a final scan at 35 weeks where we were told that the cysts did not seem to be too big and that the prognosis was good, the baby may not need an operation until he was a few months old but we should prepare ourselves that he still may need to be intubated upon birth if he wasn’t breathing well.

I was booked for induction at just over 38 weeks – as UCH is so busy they needed to make sure a neo-natal bed was ready for the baby and that GOSH were on

standby to receive him. Induction didn’t work at first, then the NNU got busy so I had to wait a couple of days before they tried to induce me again and I finally gave birth to Charley Frederick on 4th May 2003 at 12.20am. It was a long and difficult labour and he eventually was born with the help of forceps after a failed ventouse attempt.

He was put straight up onto my tummy and he made some tiny crying noises before he was whisked over to the resuscitation trolley by the neo-natal nurses. They quickly decided that he wasn’t breathing well and so intubated him and put a yellow woollen hat on his head to hold the tubes in. He was then taken down to NNU to be stabilised while I was stitched up and left wondering what was going to happen next.

We saw him again when he was about 4 hours old but only for a few minutes and we were each given a polaroid picture to keep. It didn’t seem real. When I woke up on the ward a few hours later it felt amazing that I had given birth to a baby but somehow he didn’t really feel like mine as I only had a picture to hold.

We saw him for a few hours that day but he was drugged up on painkillers and immobilisers to keep his tubes in place. All the machines were scary at first but we quickly learnt what were good SATS levels, breathing and heartbeat rates. My parents and sister also came in to see him.

Charley looked very strange physically in that his chest was huge and his stomach was concave – a bit like Superman! The NNU at UCH took a chest x-ray and said that the CCAM was worse than they thought and said it looked like he had a bunch of grapes in his chest.

He was very suddenly transferred to GOSH about 4pm on the day he was born as they had a NICU bed and he was deemed stable enough to go in the ambulance – it is about a mile and a half away. This was as shock as we were originally told it might be a few days before he was moved but I think that the x-ray made them realise he needed the surgeon’s care sooner rather than later.

I was still an in-patient at UCH so my husband (Lee) had to go to GOSH and check Charley in and report back to me by phone. He called several hours later with shocking news. Upon looking at a new set of x-rays performed at GOSH a doctor who was just passing by looked up and said – ‘That’s not CCAM, it is CDH’. Everything was being prepared for a lung operation the next day and it was all thrown into flux with the possibility of a CAT scan discussed to confirm diagnosis.

It was a very hard night on my own away from my baby and husband and everything that we were prepared for up in smoke and I had little information about this new diagnosis of CDH. I was finally discharged the next lunchtime and we went straight to GOSH. It was weird seeing Charley again as he looked so tiny in this intensive care bed lying under bubble wrap to keep him warm as he had developed jaundice. He had a personal nurse and all kinds of machines attached to him.

We spoke to a doctor who confirmed the diagnosis of a left sided Congenital Diaphragmatic Hernia without the need for a CAT scan. This meant that there was a hole in his diaphragm where his bowel had grown up into the lung cavity, squashing his lungs and heart and these would need to be replaced in the abdomen and the hole repaired. They explained that Charley would have his operation the next day and that depending upon the size of the hole in his diaphragm a patch may need to be inserted to fix the hole.

GOSH was amazing – the facilities were fantastic and the staff were brilliant. They found us accommodation 5 minutes walk away for the duration of his stay in NICU.

Charley had his operation on 6th May. We stayed with him until the anaesthetists wheeled him off to the operating theatre. It felt so strange – almost unbelievable what was about to happen. We went out and had some lunch, waited in the parents’ room, watched some TV but no news. Eventually we went back to our room and just climbed the walls – was no news good news??

After about 4 hours we gave in and my husband phoned NICU as I stood by anxiously. Then came the worst moment of my life as Lee heard the news and literally collapsed onto the bed saying ‘Oh God’. I just broke down - my baby had died – I felt the world caving in around me. Then my husband realised what I was thinking and told me that Charley was OK – he had collapsed with relief not grief. Charley had been back on the ward for about an hour but they were doing a ward round then getting him settled before they phoned us.

We rushed over to see him. The surgeon, Mr Ed Kiely, told us that the operation was a success. The hole was fairly small and they had not needed to insert a patch to fix it. They had also had to do an appendectomy as part of the operation as Charley’s appendix had ended up on the wrong side of this body. They had changed his ventilator and finally removed the yellow woollen bonnet so we could see that he had some dark brown hair.

He recovered well that night with Lee at his side but had a setback the next day when his abdomen distended and as we arrived to see him he was surrounded by worried doctors, ordering emergency x-rays. That was the second time I thought I was going to lose him and I broke down. It turned out to be trapped wind as his body got used to his new bowel layout and he was OK - Lee spent all night at his side again. I wasn’t able to as I was still recovering from the birth.

Two days after the operation he was extubated and put onto C-PAP to aid his breathing but he was doing well on his own. He was still a little up and down and we hung onto every change in his resps and SATS on the monitor.

Three days after the operation he was deemed well enough to be transferred back to the NNU at UCH. I was terrified about losing the intensive personal care that he had at GOSH but they had other sick babies waiting to come in. Back at UCH he had to stay in an incubator for a day while he was tested for MRSA and he was put under the lights again for his jaundice, which had got quite severe by this stage.

He continued to recover well and tolerated more and more expressed breast milk through a tube and came off C-PAP completely by the time he was 1 week old. It was also when he was one week that I was allowed to hold him for the first time. I was petrified as I’d never held a baby before – let alone a fragile, sick baby – but it was wonderful. He opened his eyes and looked at me.

He was moved to Special Care the next day as he no longer needed ventilation – it was quite scary not having him attached to any machines except a SATS monitor. He still had a feeding tube but we started to learn to breast feed with the help of a speech therapist and nurses. Charley fed reasonably well and got stronger by the day and we were discharged on 17th May when he was 13 days old.

The first few weeks were hard as we were so scared about his breathing and anything at all going wrong. The stress finally caught up with me; I developed mastitis and a breast abscess and had to abandon breastfeeding by 4/5 weeks as my milk flow disappeared leaving me very depressed.

At 10 weeks old we were back in hospital – Homerton then the Royal London as Charley started projectile vomiting and they thought he had Pyloric Stenosis, which would require a further operation. We waited anxiously for a scan while he was once again attached to a drip and machines but it was OK – he had a very bad case of gastroenteritis and recovered within two weeks.

Charley was doing well but he always had noisy breathing and a wheeze. He seemed susceptible to chest infections and was frequently on antibiotics. In December 2003 we were back in hospital again – UCH children’s ward this time – with bronchiolitis. They said that Charley most probably had asthma and we were given a spacer and an inhaler for him to use when the wheezing was really bad. It was impossible to use as he hated having anything put over his face.

We attended various hospital appointments and asthma clinics over the next few months and he was given a nebuliser to have at home to give him his asthma medicine as this was more effective and easier to use than the spacer. Apart from constant coughing at night and wheezing he was generally well and I returned to work in March 2004.

We decided that it would be beneficial for Charley if we moved out of London so that he could breathe less polluted air - we lived by the busy A10 - and in August 2004 we moved to Herne Bay in Kent by the sea.

Since then Charley has come on in leaps and bounds. We barely used his nebuliser in winter 04/05 and in summer 2005 he was discharged from the asthma clinic as he was no longer showing symptoms – he barely ever even wheezes these days. We have been very lucky in that he has never had any feeding problems or other CDH side-effects.

In May 2005 our daughter Scarlett Mae was born – we had extra scans during the pregnancy but she was fine aside from an umbilical hernia – seems like too much of a co-incidence though, to have another hernia in the family.

He has also recently started nursery school, which he seems to be really enjoying so far and we are all hopeful for the future.


Written by Charley’s mom, Kate Langford (Great Britain)

December 29 - Dear Nicholas Sparks (Guest Blogger Monica Young)

Dear Mr. Sparks,

Janessa was a precious baby that God called home shortly after birth. I'll never forget our anticipation her arrival. We had waited 39 weeks for her arrival. Then I went through 8 hours of labor to have our precious daughter. Then just as quickly as she had been born the doctor swept her away. They called a code blue to the delivery room. Then they quickly appeared, along with my doctor and his intern, there was another general practitioner, one specialist, one radiologist and nurses coming from everywhere. I'm guessing there were approximately 20 medical professionals in all. I just sat there with my husband at my side, watching as they desperately fought to keep our baby alive. I can remember sitting there praying for her to fight trying to give her the will to live, "please baby, I know you're a fighter, you can do it". The next thing we know the doctor came over crying to tell us there is nothing more they could do. As we sat there crying, his mother walked in to console us, the minister had come and prayed with us. She had died, due to a diaphragmatic hernia. She weighed 8 lbs, 3 oz & was 21 inches long.

Our nurse was a wonderful person, she cared for Janessa, just like she cared for any new baby. She tells us this story that was her experience with our daughter. We didn't want to hold her right away, so she decided that she would go and rock the baby, because every baby deserved to be rocked. She took her into the break room for surgery and to her surprise there was a rocking chair just sitting there, so of course she rocked our baby. She had never noticed it there and had asked several people if they had seen it there, "no, there has never been a rocking chair in there". She went back in there several days later and the rocking chair was gone. To us a sign of God to help our precious little one.

Janessa is truly and unconditionally loved by so many people. I never thought that a baby, who no one had gotten the chance to know, could touch the hearts of so many.


Written by Janessa's mom, Monica Young (Nevada)

December 28 - Dear Nicholas Sparks (Guest Bloggers Angie and Anthony Lander)

Dear Mr. Sparks,

Jessica was born on the 3rd August 1998 (my actual due date) after a trouble free pregnancy, 2 normal scans and a very good labour which only lasted 9 hours. I was handed a totally perfect beautiful baby girl who weighed a healthy 8lbs 5ozs. Jessica is our first baby. For the first week at home she did very well all round her feeding seemed fine and she was gaining weight normally. Then Jessica started to projectile vomit half way through or after feeds. We told the midwife and described what Jessica did, we were told that it was fine and to try infacol which didn’t work and Jessica continued to vomit. When Jessica was about 4 weeks old she began to only take ½ fl oz of milk and was then so tired that she would need to sleep. She got worse and began to make a grunting noise when breathing out. I took her to a doctor's clinic at the hospital on the 29th August 1998 (I remember this date because it was my birthday).

Jessica was kept in overnight for observation and I stayed by her bedside trying to get her to feed. The next day she was sent home, we were told it was an upper respiratory tract infection (a cold). I felt like an over sensitive mother. However Jessica didn’t improve, so we went to see the G.P who told us that the hospital was right and it would take time to get better we were now having to try to feed Jessica every 2 hours. Jessica was due to be weighed the next day but I didn’t need the scales to tell me that she had lost a lot of weight, her clothes that fitted her a week before now fell off her. We then saw another G.P and he tried putting Jessica on soymilk. Jessica began to look and feel worse we were frightened to cuddle her too much because of the weight loss, her breathing had worsened and she had what looked like blood in her wet nappies. We were finally sent back to the hospital.

The doctors this time took a chest x-ray and could see bubble shapes on Jessica’s right lung. She began to be treated for pneumonia. I still wasn’t sure about this because Jessica didn’t have a high temperature. The doctor told us that it could be something that she was born with, I felt the guilt that I imagine most other mothers in this position would feel, it must be my fault (which of course I now know is false). Jessica was starting to feed on the 8th September when she choked and went blue, she needed some oxygen and the x-ray was repeated. This confirmed that Jessica had a congenital diaphragmatic hernia and she would need an operation to repair the hole. Jessica was transferred to the Birmingham children's hospital that night. Jessica’s consultant explained to us that Jessica’s liver had blocked the hole before birth and he told us about the fatality rate of children with this condition. He also told us that Jessica would also be in intensive care for a few days after the operation. Jessica’s operation took place on the 9th September 1998.This was the worse few hours of my life so far, I couldn’t bear to think of someone so tiny going through all that Jessica had to go through. I had very mixed emotions at this time. I cried because our baby had to have the operation but I was also relieved that we had finally found out what was wrong with her. The operation was a success and Jessica was so strong that she came straight back to the ward. One of the nurses called her the little miracle. Jessica went from strength to strength and was feeding again within a few days and was back home again a week after the operation.

Jessica has continued to do really well and even won a local bonny baby competition just before Christmas, which we are very proud of. We know that we are very lucky to have Jessica and that there are much worse cases of CDH and we hope all the other children do well too. Jessica brings me so much pleasure with her constant smiles and giggles that I don’t know what I ever did without her.


Written by Jessica's parents, Angie and Anthony Lander (Great Britain)

December 25 - Dear Nicholas Sparks (Guest Blogger Carrie Williams)

Dear Mr. Sparks,

Henry Davis Williams was born 11-13-12 at 3:23am and passed just a few hours later.

The doctors cannot give us a concrete reason why Henry passed away. Oddly enough, the one health problem we knew Henry was suffering from, congenital diaphragmatic hernia, played no part in his passing. He had a good lung, and it was working hard. Henry had a severe case of metabolic acidosis and despite the doctors best efforts, it could not be cured. The doctors also feel Henry had Fryns syndrome, a very rare condition. Most babies with fryns pass away in utero. However, a few affected individuals have lived into childhood. Many of these children have had severe developmental delay and intellectual disability.

Henry was a very sick little boy. We feel very strongly that all of the love and support we received throughout our pregnancy fed Henry and kept him healthy and strong enough to not only reach full term but to also come out fighting. We are so thankful for the time we had with him, holding and loving on him. A memory we will cherish forever in our hearts.

Written by Henry's mom, Carrie Williams

December 24 - Dear Nicholas Sparks (Guest Blogger Alan Knapton)

Dear Mr. Sparks,

Our daughter Clara was diagnosed by ultrasound at week 16 during a routine amnio. It was suspected even before that. She was born full term during January of 95. Her left sided hernia was repaired at about 6 hours of age. Even though much of her intestines were up in her chest, the hole was rather small and easily closed without a patch. Six hours later she was on ECMO.

Her "progress notes" (or lack of progress) from the NICU tell us of nursery stay. Along with her CDH, she had Hypertension, Pulmonary Edema, Cardiac Stun (Decreased Heart Contractions), Urinary Track Infection, Hemoperitoneum (massive abdominal bleed), PPH, Occiput hemutoma, Bronchopulmonary Dysplasia, and suspected GE Reflux. She also went through Morphine withdrawal after being on it for 30 days. To everyone's surprise, she came off of ECMO on her second attempt, 24 days after birth. Termination of her treatment was "suggested" at day 20, following her failed idle. Her vent settings were better than expected, and she came off the conventional vent after 7 days. She spent one day on the jet vent before she pulled the tubes out. About another month of oxygen. She came home on her second month birthday with standby oxygen.

We had a night nurse for the first month at home (her third month of life) who fed her with a NG tube. During the day she took the breast. Her night feeding formula was a concentrated Similac fortified with Polycose to boost the calories. We used breast milk whenever possible, also fortified with Polycose. She had Cisapride to prevent reflux, and also Aldactaside (sp?) was given twice a day in her vaporizer(I forgot the name of that device!) She had a "speech therapist" come in to work on her suck/swallow reflex that finally developed at about 4-6 months. She also had someone from Infants/Toddlers program come in to work on her motor reflexes. She was behind till about 6-9 months, but by 11 months she was walking.

We tried to give her as much breast milk to boost her immunity, and she had only 3-4 mild colds her first year. Her second year was just as good. We did keep her at home and avoided as much possible exposure to germs as we could during these first few years, but now she is going twice a week to day care. She sings, dances, speaks English and Spanish, and is a very happy, loving child.

We are very lucky, and we thank God every day for Clara. The doctors and the technology allowed her to live, but God gave her life.


Written by Clara's dad, Alan Knapton (Maryland)

December 22 - Dear Nicholas Sparks (Guest Blogger - Joanne Kjaersgaard)

Dear Mr. Sparks,

Ariana was born on the 8th of May, 1990. She is our third child & was dubbed the wild child when she was 2, she has also been referred to as action girl! This is a quick summery of her life to date.

Detected at 17.5 weeks via an ultrasound, 13 ultrasounds & 1 amnio between 20-34 weeks, 6 days overdue, born naturally with an audience of 13 Dr’s & nurses. I think we had a lot of tests as not too many babes had been detected through pregnancy & I believe they got their worth with us! We were kept up-to-date & never felt ‘left out’ of the goings on.

When she was 2.5hrs old, she was stable enough to start surgery. It took 2.5hrs. Her stomach, all of her large & small intestines, 1/3 of her liver & her spleen had managed to move through the hole in her left diaphragm. Her bowel was mal-rotated. She had 1/3rd of the top lobe of her left lung. 4 weeks later we where home. She threw up constantly, badly. At 11mths she had 2nd surgery, a Fundoplication. She had no valve at the top of her stomach, so they created one for her. She has not received her nickname without cause. At 2, she unlocked the front security screen door & went wandering off down the street. At 3, she climbed a 6ft pool fence (no foot holds), at 3.5, she managed to get onto the roof of the house. She scaled our 6 ft fences to visit the neighbours! She drew on walls, tables & chairs. She never sat still for a meal & still doesn’t today. Her mind seems to work at double the pace of the rest of us, so does her body! She has managed to a great deal more, good & bad, but I’m only allowed one page!

In her first year of school, I was called up to the Deputy’s office 4 times. This year, she’s in her 5th year & I’ve only been up there once ..... so far. She took up Karate last year, but we had to ban her from that because she was starting to beat up on her sisters every time they annoyed her. By rights, she should have had a few broken bones with the tumbles she has taken but she hasn’t?

She is a generous person, always willing to share. She is the one that accepts the dare, always the first to ‘give it a go’. She gives everything she does 110%, be it good or bad, behavior or habit. There is a peaceful quiet that settles on the house when she is not here, that becomes a gaping hole if she is gone for more than a day. There is no doubt that she is the spice in our house, & we have 4 kids! She drives me crazy, she stirs up her sisters & brother. She is life at the fullest & we wouldn’t have her any other way. She is our wild child, our action girl & we love her.

There is no doubt in my mind that this girl will succeed in everything she does, lets hope WE can survive what she has in store for us.



Written by Ariana’s mom Joanne Kjaersgaard (Australia)

December 21 - Dear Nicholas Sparks (Guest Blogger Kimberly A. Webster)

Dear Mr. Sparks,

I found out I was expecting my second child in September 1999. This would be a sibling to our then 1 1/2 year old son, Cole.

I was so excited and grateful to be given another blessing to nurture and love. My husband and I were so excited as the weeks passed I happily went through all of the prenatal testing. I was very sick once again as I was with Cole but I knew what miracle was happening inside me. We had experienced a molar pregnancy before Cole and we knew how fragile life was this pregnancy progressed and survived a car accident on February 28th. I totaled my vehicle but thank God baby and I were okay.

Early in may my husband, Cole and I went to a routing ultrasound at my ob office. The technician had the look on his face that was too familiar for me. My blood went cold because I sensed his concern. He called a doctor in for a second opinion as to what he was viewing the doctor explained that the baby's stomach looked very full and that was the shadow they were seeing. At a closer look he talked about CDH. It was downplayed so much that I was not worried. I left the office with an appointment for a level 2 ultrasound in a few days. My midwife was teary eyed when I left and hugged me and said she would pray for us. I actually thought everything was fine and correctable. I was a little upset about the possibility of not delivering at our local hospital but at one more equipped to handle the operation that would follow the birth.

The level 2 ultrasound confirmed CDH and my world changed once again I had the feeling that all was not going to turn out okay like I had with the molar pregnancy. I focused on my work and my family and prayed that this baby would battle the odds. The amnio showed no abnormalities and told us we had a daughter. Her name is Shae Ashley.

We were sent to children's hospital in Philadelphia for level 2 ultrasound, fetal echocardiogram and an MRI. After a day of testing we had a consultation with dr. Alan Flake, who most of you probably recognize as one of the forefathers of the studies of CDH. What an honor to be sent to one of the top hospitals in the U.S. and having the worlds best advise you on a decision.

Shae was given a very grim prognosis and fetal surgery was not even offered as a solution. The doctors along with our genetics counselor gave us some choices. After painting an awful picture of what life would be like for our daughter my husband and I knew without a doubt what choice we had to make. I will be eternally grateful to God for giving us the tools to make our decision, and for the strength to carry on despite our heartache.

Back home we met with our doctors to make arrangements. We were going to have Shae at 25 weeks gestation. We knew the outcome and we were at peace knowing she was not going to suffer. We wanted our daughter in the worst way but not at her expense. She was not going to have the life that Cole was having. We could not put her though the trauma of being born with her severe form of CDH.

Being induced was horrible and the birth is something ill never forget. It was the single scariest moment of my life. Then I saw her and immediately felt at peace with my life. I never doubted making the choice. She was truly an angel she touched our lives in a way that no one could understand she was the most beautiful baby.

We are constantly reminded of Shae's life. We have surrounded our home with pictures and reminders. We put in a garden in the memory of her sweet life. We know that one day we will all be together again. Shae is our baby girl and Cole's baby sister and she was called home to do a job. Until we meet again my little princess.


Written by Shae's mom, Kimberly A. Webster (New York)

December 19 - Dear Nicholas Sparks (Guest Blogger Michelle Weber)

Dear Mr. Sparks,

It was our twenty week scan for our third child; we were thanking our lucky stars we had come this far as a threatened miscarriage earlier in the pregnancy had almost meant this day would never come. I was feeling nervous- call it intuition - my husband Phil was trying to keep my spirits up and tried reassuring me all was OK before the scan.

A short while later there on the screen was our little boy, Callum. He was OK, now I could relax; then the dreaded silence as the sonographer hovered over one part of my expectant belly. My nerves were getting the better of me. "Is everything OK?" I asked. I was told that she’d need to discuss something with her colleague. Lying there, scared beyond belief with two sonographers whispering about what they could see. Even at this point no one would confirm what they had found. We were told a consultant was on the way over to complete the scan but not told anything else. The wait was unbearable….what was wrong with our little baby? The consultant confirmed their suspicions…CDH. It was then explained what CDH was, and what chances our little guy had. We were given a hard choice - terminate or take our chances. We were then led to what amounted to be a storeroom for old chairs and office equipment. The four walls seemed to close around us; what a choice to make. The after care from the scan was dreadful, just led into this room and given 15 minutes to talk it over. We needed a lifetime to decide, not 15 minutes. How could we not try giving our little boy a fighting chance? We remembered the scan; Callum seemed to be giving us a ‘thumbs up’ when they scanned over his hands, so we saw this as a sign and made our decision to give him the best possible chance for life.

It was only 12 weeks later that I felt a trickle of water. Nothing to be concerned about but thought it best to get checked at the hospital. My waters were breaking….NO NOT YET….I’M NOT READY! I was transferred to the closest available specialist hospital, St. George's Hospital in Tooting, South London. My terrified husband followed behind. Steroids were given to help Callum’s lungs but the waters stopped and I was kept in the hospital, confined to the bed. I was closely monitored as infection could set in but it was thought best to allow Callum to grow as much as possible as they didn’t want him to be premature to add more complications to what was now discovered to be a severe CDH. His liver, bowels, & stomach were in his chest cavity, stunting the growth of his lungs and putting pressure on his heart.

Two weeks later, on August 16th 2001 I gave birth to Callum. He even cried when he was born; I had been told he may not have been able to do this. They even asked if I wanted to hold him; I was more keen to get him ventilated and cared for than to delay this, so I told them I didn’t want to. Little did I know that I would always regret that. They’d also run out of blue bonnets to hold the tubes in place and had to put him in a pink one, now they’d think he was a girl, as if he didn’t have enough to contend with. So here we were, myself and Phil, in an empty delivery room. Callum had been sent down to the SCBU and everything seemed so unreal.

We were given a little Polaroid picture, but the first time we saw Callum was in the baby unit. He was so tiny, but perfect. He was on an oscillator and bounced around in the incubator. It was from this first encounter with the oscillator that his kindred spirit became the bouncing Tigger from Winnie the Pooh. He was stable and for the first time things looked positive. I thought all was going to be all right and we had made the right choice. This was just the beginning of what was going to be the most hurtful and wonderful experience of my life.

Callum’s first hurdle would be to be strong and well enough to have surgery to fix the diaphragm. It was a roller coaster ride from then on. One of those times in life when you feel the great highs and the terrible lows. It was a fight for time to get Callum ready for the surgery; without it he didn’t stand a chance. It finally came to a point where it was decided by the team that Callum was as ready as he possibly could be for the operation. The surgeon, who was brutally blunt, said he felt in his opinion that Callum wouldn’t survive the operation; he gave the ultimate responsibility to the anaesthetist. It was decided to go for it. We were led into the parents’ room at the SCBU; the wait was agonising. It grew dark but neither of us could face turning on the light. Our hearts were in our mouths every time we heard footsteps approaching the door. This seemed to last an eternity.

Finally, hours later, the door opened and the surgeon appeared, even he didn’t turn on the light and we finally saw the man in this blunt uncaring surgeon. He told us in a quivering voice what a little fighter we had there and how proud he was of him to come through such invasive surgery. He admitted he had been wrong to doubt Callum and with that wished us luck and left. We were left drained and elated; our little boy was proving them all wrong. Even the anaesthetist was amazed, she told us the amount of drugs Callum had to get him through the operation should have been enough to get a 12 year old through major heart surgery but he was already coming round before the surgery started. Our little star was marking his mark on everyone that came into contact with him.

We felt from here we were on the road to recovery. We knew Callum would have a lifetime of health issues but he would be alive. We even discussed moving him to our local hospital for the next couple of months so he could be monitored. That news was the best, it meant Callum was getting better and we wouldn’t need to do the 2.5 hour drive from our home to the hospital anymore. The travel was taking its toll on us both as well as our other two boys who were constantly being babysat by a very good friend.

For the first time in weeks we allowed ourselves to relax a little. Until one night we were phoned by the hospital and told Callum had taken a turn for the worse. His sats were low and the required O2 was up to almost 95%. It was soon discovered he had contracted MRSA. The roller coaster ride was back, but this time it just seemed to be one big dip. It seemed to just get worse from then on as Callum’s health deteriorated. Things seem to have come to a head on what we called ‘dreadful Thursday’. We were asked to consider turning off the life support. How had things come to this? For the first time in a while my mind was clear and looking at Callum and the pain he was in, I found the strength to see things from Callum’s point of view. I thought it would be for the best. Phil couldn’t face this decision and flatly said no way. It was a day later as we entered the unit that Callum had one of his amazing days. How many times was this unique little boy going to surprise everyone? There, with a huge grin was one of his special nurses. She was so thrilled to show us how well he was doing. We then had one of the best weekends with him. No thrill rides just plain sailing.

The following week Callum’s condition took a turn for the worse again. It was on Friday 7th December, we entered the unit and immediately saw another of Callum’s favourites ‘Tom-Thumbing’ him. She calmly said he was being a naughty boy and wasn’t behaving himself. This went on for a couple of hours; his sats would drop as soon as he was back on the ventilator but would rise slightly when being ‘Tom-Thumbed’. Bless this nurse, she did this for two hours. Even the doctor who took over for a few minutes complained his hands were hurting. She just pushed him aside and carried on. They sent for the consultant and we were moved back to the parents’ room. The consultant came to see us and said they would try to change his tube as it may be blocked, if that didn’t help then he may be trying to tell us something. We knew then it wasn’t the tube and for the first time we saw things the same way. As expected the tube wasn’t the cause, Callum had just had enough.

We were asked to come and say goodbye, this just wasn’t real, our beautiful boy was leaving us. There wasn’t a dry eye around his bed as they handed me Callum. He calmly looked at me, held my gaze for a few seconds then looked at Phil. He then looked back at me and then his tube was removed. He gently closed his eyes and took his last breath. At last now Callum was in peace.

We got to bath him and dress him. Leaving him was the hardest part, we both felt as if we were abandoning him. We left the hospital to a beautiful, warm sunny day and considering this was December saw this as a sign from Callum. Not a day goes by when we don’t think about him. He touched us and all others who came to know him in such a wonderful way; we knew even then we had made the right decision not to terminate. As we always say to Callum, our unique little boy, you’ll always be in our hearts and will never be forgotten.


Written by Callum’s mom, Michelle Weber (Great Britain)

December 17 - Dear Nicholas Sparks (Guest Blogger Jennifer Wasik)

Dear Mr. Sparks,

My story starts on March 18, 1997 I found out I was pregnant with my first child and my husband and I were so excited our dreams were shattered on April 11, 97 when I began to bleed, a trip to the Dr. confirmed my worst fear I was indeed miscarrying. I was devastated and thought nothing in the world could hurt that bad. I was advised by my dr's to wait three months before trying again to prevent another miscarriage but I felt I was ready to try and just 2 months later on June 22, 1997 I found I was pregnant with my little Zachery. I can't describe the feeling it was almost as if the pain of my miscarriage was being replaced with hope for the future. I had ultrasounds at 7, 10 and 16 weeks just to make sure everything was ok and I was told I was having a very healthy baby. I had a very uneventful pregnancy up to that point but for some reason I didn't feel right, I felt something was wrong with my baby and I requested another ultrasound at 20 weeks but my Dr. refused saying that it was not justified we already knew everything was perfect. I quickly learned of a man who would come to my home for $75.00 and do an ultrasound in my living room so that my whole family could attend and we could find out the sex of our baby. This man was very nice and we quickly learned we were having a little baby boy. I started to cry somehow knowing that I had a little boy inside of me made me feel even closer to my baby. This man was only supposed to tell us the sex of our baby nothing else but he started looking around and offering information. No neuro tube defect, no fluid in the brain, stomach, bladder and kidneys all appear to be functioning and in the right place. Good strong heart all 4 chambers. I was thrilled I felt so much better and I knew everything would be just fine. I went the next 7 weeks in which time I had my baby shower since a lot of family would be in town for Thanksgiving they all wanted to throw me a shower and it was perfect. I got everything I needed for my little guy. When I was 27 weeks pregnant I was having a lot of pain in my side and I went to Labor and Delivery as this is where my doctor told me to go. They decided to do an ultrasound to make sure the placenta hadn't started to tear away. I went down to ultrasound where the technician showed me my baby's face and confirmed the fact that we were having a little boy (he wasn't shy). I was so happy and was told my placenta looked just fine. Then she asked if I could wait outside of the room that she would like the radiologist to come take a look at my baby. I asked why and she replied that they can usually get a better look. Well I knew something was wrong I had several ultrasounds before this one and never did the radiologist have to come take a look. I waited alone in that hallway for a half hour wondering what was wrong with my baby. Finally the radiologist came and I noticed he was really looking at Zachery's brain I asked quietly what was wrong. He replied "your babies ventricles in his brain are dilated) What does this mean I asked. He said that I would have to talk with my Dr. and that I was to go to his office right away. I drove hysterically to my dr's office where I learned that Zachery had Hydrocephalus (fluid in his brain) and that it appeared to be severe. I also learned I had too much amniotic fluid and that he was sending me for a level 2 ultrasound. I called the Perinetal Dr's to make my appt for this ultrasound and was informed I could not be seen for 3 days. I immediately started screaming that I could not wait that long and the appt was scheduled for the following day. I went to the office with my Mother, I told my husband to go ahead and go to work that they probably wouldn't tell me anything new. Boy was I wrong. I learned that day that Zachery had very severe Hydrocephalus and that he also had CDH and that his heart was on the wrong side so they thought it was a pretty big hernia. He also had clenched fists probably due to the compression in his brain and I was told the prognosis for my son was very poor. I also had an amnio to see if maybe there was a chromosomal abnormality but it came back normal. I left the office hysterical and stayed that way for 48 hours, I then decided I would find out everything I could about my baby's problems and I got on the internet and found CHERUBS. I have to tell you that reading all of the stories about the baby's who had survived helped me tremendously. I now had hope that we would have a miracle. I went through the next weeks seeing surgeons and having weekly ultrasounds and bi-weekly Dr. visits. I also used this time to bond with my precious baby who was very active and I just knew everything would be ok. we would fight. At 30 weeks I began steroid injections to help with lung development. I also went in for a drain of my amniotic fluid because I was measuring 48cm which is like full term with twins. A lot of extra fluid. I was ok after that and prayed every hour everyday for our miracle. My fluid slowly started to creep back up and at 33.5 weeks I needed to go to the hospital for another drain. Everything went smoothly and my contractions were no worse than before so they allowed me to go home. I woke up the next morning and called my best friend to chat. As I was on the phone I felt a huge gush and realized that my water had broke. My husband rushed me to the hospital and the contractions were really coming on strong. They immediately put me on Magnesium sulfate to stop my labor, they said if Zachery was born now he surely would not survive. I laid in bed on this drip all day. In the evening one of the Dr's came in and said what are you doing on this medication, we don't put people on this med after 32 weeks so I was taken off of it. My contractions started again a couple hours later and I went through the night in a lot of pain, trying to be quiet and let my husband and mother get some sleep. In the morning around 5am another Dr. came in and said why are you off of your medication, I replied that another Dr. had taken me off and she quickly gave me an injection of terbuteline to once again stop my labor. Saying we cannot have this baby right now. I was really angered at this point and suggested that all the Dr's figure out what they were doing. She said they would have a meeting and she would be back with the final decision. A few hours and 2 terbutaline injections later she came back and said that they didn't feel Zachery had a very good chance to live whether he was born now or in two weeks and that because my membranes had ruptured I was at risk for infection which would harm me and my baby. They then took my temperature and discovered that I was already starting to get this infection and decided that I would again be allowed to start laboring. This is when my Mother jumped in and said why are you going to put her through any more pain with labor when you are planning to do a C-section any way due to the Hydrocephalus. They agreed and the team was put in place. The Anesthesiologist came in and said he would allow my husband, mother and mother in law in the operating room with me (a definite first for this hospital) I was taken for my spinal and they could come after I was numb. Well that was an ordeal in itself. I was poked in the spine 23 times as I cried and the Anesthesiologist got frustrated saying my disc spaces were too close together. He finally decided to do a spinal with an epidural needle and my legs went numb. This took an hour and a half so my family was horrified as they walked in. It was now time to deliver my little boy. I took a deep breath and said one last prayer. Zachery was born at 1:50pm on Jan 29, 1998 he was immediately whisked to the baby warmer next to me where the neonatologist was waiting to intubate him. I only saw a glimpse of him for a brief second as they carried him over there. I remember thinking the whole time Cry, Cry please Cry, but he didn't. I was listening very closely and I heard the nurse say I have a heartbeat and the other nurse saying I have breath sounds on both sides. I was thinking that was all a very good sign. Then it happened, the anesthesiologist came over and said they were having a hard time intubating Zachery because he had some kind of deformity in his neck but that they were still trying very hard. The room was silent as my baby fought for his life. The next words I heard were. "we are very sorry there is nothing more we can do, your baby is still alive would you like to hold him". Of course I want to hold him! They laid Zachery on my chest while they were still closing my incision. He never opened his eyes or gasped for air, he was perfectly still and very peaceful. His heart stopped beating as I held him. I will forever be grateful that he died in my arms instead of on that table surrounded by strangers. He was so beautiful and perfect to me in every way. I have never felt love the way I did at that moment. I was taken to recovery still holding my baby and that is where I learned that when they went to intubate him he did not have a trachea or esophagus instead he had one tube which they assume was a combination of the two and they had never separated. My family was brought into the recovery room as we all held my son and cried for almost 3 hours. I can't even put into words the pain I felt and still feel. I love that little boy more than I could ever love again and my heart aches day after day as I look at his pictures and talk to him. I even find myself screaming "give me my baby back" but no one ever answers me. A week after I got home I got a call from the geneticist he suspected Zachery may have had a very rare genetic syndrome and the possibility of this happening in the future was great. Now not only was I mourning the loss of my sweet Zachery but I felt I had no hope for the future. I am happy to say I got the final report just days ago and Zachery did not fit this syndrome or any other genetic syndrome and the Dr's do not think this will happen again. Thank you God! I know my baby is in heaven yet I feel him with me all the time. I know he can hear me when I talk to him and sometimes I even feel like he answers me. I have a hard road ahead of me. Each day seems more impossible than the day before.


Written by Zachary's mom, Jennifer Wasik (Arizona)

December 15 - Dear Nicholas Spark (Guest Blogger Tom and Diane Vosse)

Dear Mr. Sparks,

On October 14, 2005 is when our lives changed forever when I had found out that I was pregnant, I was so excited to finally start our own family. We had lost our first baby in 1998. It took us 8 years to get pregnant again. I told my husband after dinner one night that we where expecting and he just had this big smile on his face. He didn't know what to say. My first doctor’s visit was on November 1, 2005. Dr. T my OB-GYN checked me out and everything was fine. He told me that my due date would be June 24, 2006. I was so happy because June is my Mothers birth month. December 2, 2005 was my next appointment and He couldn't hear the baby's heart beat so he looked at the baby with an ultrasound machine and the baby was OK. At this time I was 10 weeks. I could see Dakota Mae's arms & legs moving all around. I started to cry cause it was so amazing to see this baby after loosing our first child. January 11, 2006 I went to Dr. T and he checked me out and said everything was still OK. February 6, 2006 was the day I found out there was something wrong with Dakota Mae. The nurse doing my ultrasound seen that her left kidney was bigger then the right side. The nurse had taken a lot of pictures to show the doctor. My next visit was February 10, 2006. Dr. T explained to me that this could be very serious or it might not be anything. He wanted to send me to St. Mary's Hospital to have a level 2 ultrasound done, just to make sure every thing was OK.

February 27, 2006 a Dr. the Maternal-Fetal specialist at St. Mary's Hospital looked for over a half hour at my ultrasound findings. He determined that the baby had CDH aka Congenital Diaphragmatic Hernia. What is this? It is when the diaphragm does not completely close, a hole in the diaphragm where the stomach and the intestines are push up in to the chest cavity. Pushing the heart over to the right and putting pressure on the developing lungs not letting them grow. The Dr. told us that Dakota Mae would have to have surgery after she was born and even with having the surgery it didn't guarantee that she would make it. My Heart just dropped after being told all of that. He recommended that I have an amniocentesis done, to check and see if she had any other chromosome abnormalities, which could result in more defects. I could have the procedure done that same day. I was so upset I didn't know what to do. I called my husband "Thomas" and he said if it was in the best interest of the baby then to go ahead and do it. I plan to have it done anyway. I talked to a Genetic Counselor that same day. She asked me questions about our family having any birth defects, which could help them determine other problems. She also explained what CDH was so I could understand it a lot better.

February 28, 2006 was the first time I felt Dakota Mae move. She kicked me and I had Tom put his hand on my stomach and she just gave him the biggest kick. He couldn't believe it he was so excited. I am 23weeks now. March 8, 2006 was my next appointment with Dr. T. He checked me out and every thing was still OK. March 31, 2006 was my next ultrasound appointment at St. Mary's Hospital. The nurse checked Dakota Mae and said that she was about 2 lbs 5 oz now and that I'm 27 weeks 6 days. She took some pictures of Dakota Mae and give them to me and I showed everyone I was so happy but so scared at the same time. April 3, 2006 was my appointment at Cardinal Glennon for a fetal echocardiogram, that is an ultrasound of the Baby's heart. The nurse there checked Dakota's heart for about a half hour. The Dr. explained that Dakota's heart was pushed over to the right and turned a little, but she said that all four chambers were working properly. That was finally some good news for the most part. All this bad news has taken a toll on me.

April 5, 2006 I went back to see Dr. T and he checked me out, He said that everything was the same and that she was still doing ok. On April 8, 2006 was Dakota Mae's baby shower for my side of the family and I had so much fun seeing all my family and friends. But I didn't know if it was right to have the shower with Dakota's condition. We received a lot of gifts for Dakota Mae, but My favorite gift was a pink blanket that my cousin Rhodie made for her.

April 11, 2006 I had to go and do my glucose test witch I didn't pass. April 19, 2006 I was back in to see Dr. T and he said I had failed both of my tests. Then he tells me that my belly measured at 36cm when it should only be at 30cm at this time. Dr. T told me that was a sign of me having gestational diabetes, So he asked me from now on to start going to the OB-GYN clinic at St. Mary's Hospital because they could help me allot more. He thought I would be better off because I was already going there for all my ultrasounds and other tests. April 21, 2006 I was back at St. Mary's for my 3rd ultrasound and the nurse said Dakota was about 3 lbs 8 oz now. I was at 30 weeks 6 days. She gave me some more pictures of Dakotas’s feet, butt, and a side view of her face. I was just so happy to see her I started to cry. The nurse that was doing the ultrasound noticed that I had a lot of extra fluid around Dakota she asked me to see the Dietitian. I was then diagnosed with Gestational Diabetes. April 27, 2006 I was put on a diet and I had to watch what I ate.

On May 4, 2006 was the start of everything going wrong. My husband’s grandfather passed away and that Sunday May 7th was his wake. I was feeling OK at that time but I was tired. May 8, 2006 was the morning of the funeral and my 4th level 2 ultrasound appointment. As we got done at the church my husband and I noticed that our window was broken on the passenger side door of our truck. There where some people cutting grass next to the truck, a rock must have gone through and broke it. So here I am needing to get to the cemetery and we had to wait for the police to get there. It was not long before the police showed up and we then rode to the cemetery with his family and left the truck at the church with a broken window. My parents had picked me up at the cemetery to take me to my appointment since Tom had to get the window fixed. I had to wait at least an hour before the Doctor could see me because there where a lot of people in the waiting room. I first had to see the dietitian and show her my dairy of what I had been eating. When I went in the see the Doctor she was checking me out looking for Dakota's heartbeat. She couldn't find it. She then brought in an ultrasound machine to look at Dakota better. There still was no heartbeat. The doctor looked at me and said she thinks Dakota had passed away. I couldn't believe what she was saying. I Lost It! I look at my Mom and Dad and they didn't know what to think. She went to get 2 more doctors to confirm what she had seen and the head doctor did confirm May 8, 2006 that Dakota had passed away within 24 hours. I was 33 2/7 week. I was in shock. I called my husband and told him that Dakota had passed away and he was in disbelief. When I talked to the doctor I decided to be induced. I told Tom to get to the hospital ASAP. I was taken to my room and that night it had all sunk in. My little girl was gone. I cried all night long with my husband at my side. May 9, 2006 my water broke at 7:30A.M. and I had Dakota Mae at 11:39A.M.. She was 3 lbs 13 oz ,18" inches long, with blond hair and blue eyes. Dakota had came out breech. I had no problems delivering her. The doctors were so gentle and so caring. I held her for the longest time and I didn't want to let her go. My husband, mother, father, and sister where there to support me in this difficult time. My pastor and the chaplain from the hospital gave Dakota Mae a blessing. We all took turns holding her and telling her how much we Love her and how much will miss her. Dakota Mae was so beautiful she looked just like her Daddy, tall with long arms & legs. She had long fingers and big feet too. I was then taken to my new room. My family stayed with me a while and then left so I could spend a little alone time with Dakota Mae. I told her how much she meant to me and how much I Loved her till about 5:30A.M that next morning. I then had to say my good byes. I didn't want her to go, but I gave her a big kiss. I told her that I loved her, and that God would take good care of her and that one day we would be together. I had gone home that day and my family was there to comfort and support me when I needed it the most. May 13, 2006 was Dakota Mae's funeral. All of our family and friends where there to support us. It was hard to say good-bye to my beautiful baby girl but I managed to do it. The service was a beautiful service with such beautiful flowers from all her family and friends. I go out to the cemetery every chance I get to talk to Dakota and tell her how much we Love her and Miss her.

We where blessed to find out on May 9th 2007 on what would have been Dakota Mae's 1st Birthday that I would be expecting again. Dakota Mae now has a baby sister named Amanda Mae.

Written by Dakota Mae’s parents, Tom and Diane Vosse (IL, USA)

December 13 - Dear Nicholas Sparks (Guest Blogger Myra Verdin)

Dear Mr. Sparks,

Quinn Michael was born on July 14, 1995. He was about 10 weeks too early, and was born with a Diaphragmatic Hernia. The doctors did not know that my Quinn was sick until he was born.

My water broke at about 4am the morning of the 14th. Scott and I rushed to West Jefferson Hospital. They did an Ultra Sound and saw he was breach. So at 6am I had him by C. Section. After I was in the recovery room a nurse came in to the room and told Scott and I that "Your baby has a deformation". Then she took Scott to see Quinn. Later at 5pm they gave up trying to save his life and wheeled me into hold him. I am not sure how long I held him but it was not long enough. He passed away at 3am July 15th. We had a memorial service for him about 2 days later. I never knew we had so much family and friends.

Mommy loves you Quinn I am so blessed that I had you in my life no matter how brief your stay. I am glad that I got to hold you when you were still alive but I regret not holding you after you passed away. You are always and forever with me.


Written by Quinn’s mom, Myra Verdin (Louisiana)

December 12 - Dear Nicholas Sparks (Guest Blogger Mark & Clare Kelly)

Dear Mr. Sparks,

This is the story of our son Lewis who was diagnosed in utero at 20 weeks with a left-sided diaphragmatic hernia. My wife Clare and I were trying for our first baby, and to our surprise, she fell pregnant almost immediately; we were thrilled to bits. But at six weeks, Clare started to bleed and from then on the pregnancy seemed to go from bad to worse. The baby survived the bleed and when our 20-week scan finally came around, we were excited to see our healthy growing baby. These feelings were soon stamped on when the sonographer said there was something wrong. We had a feeling something was not right when there was a silence throughout the scan. The sonographer told us that she was pretty certain that our baby had a diaphragmatic hernia and that she was going to check with a colleague. She then left the room. Clare and I looked at each other in horror-- what the hell was a diaphragmatic hernia? We waited a good 15 minutes before someone finally returned and explained to us how serious the problem was. We were both devastated since our baby was only given a mere 5% chance of surviving; we went home and told the family the bad news. Our specialist had given us two options, firstly to end the pregnancy and secondly to carry on knowing the bleak outlook. We considered the first option but not for very long. Our baby only had 5% chance of making it, but that meant that there was a chance, and we couldn't throw that chance away so we chose to carry on.

Clare had an ultrasound scan every 4 weeks and also had an MRI scan to confirm that the liver had not herniated into the chest. The liver appeared to be in its normal position, which was something anyway. The scans revealed that our baby had a large left-sided CDH, and the stomach, intestines, and bowel were all in the chest, which pushed the heart over to the right side and compressed his growing left lung. Later in the pregnancy, the baby's lung to head ratio was 1.67 which we were told was a good figure, and Clare was booked in to have 4 courses of steroid injections to encourage lung maturity. It seemed that at every scan there was a little more glimmer of hope, the chance of survival had risen from 5% to more like 50%. A foetal blood sample was done to rule out any other abnormalities, and after two weeks of agony the results came back normal. It was from this test that we found out we were expecting a baby boy. Each time we came away from the hospital we both felt more reassured that our baby would be alright, but at the back of our minds we knew that whatever the outcome it was going to be a bumpy ride and that our son was going to have major surgery if he was to survive.

On the 24th January 2002, at 8:30 am, Clare was induced due to high blood pressure. It was decided that this would be best, since the delivery team would have everything prepared in order to give our son every possible chance. The contractions came on quick and strong, and it wasn’t long before Clare requested an epidural. Eight hours later our son Lewis was finally born vaginally with the use of forceps. He made his entrance at 5:04 pm, weighing in at 6 lb 14oz.

Our son was beautiful, and he even managed a little squeak before being swiftly whisked away to the other side of the delivery room. The delivery team worked fast, and we were soon given the thumbs up that he was stable. Neither of us was able to hold him or touch him, but we were given another quick glimpse of our gorgeous son before he was taken to SCBU.

While Clare was recovering from the birth, we were informed that Lewis was doing well and only required 40% oxygen. After about an hour, Clare was feeling up to visiting Lewis, and doctors said that he was settled enough for us to see him. The walk to SCBU was nerve-racking, not really knowing what we were about to see. It was quite strange really because you tend to look past all the tubes and wires and look at the beautiful person underneath, and at that moment we were so proud of our little boy, and we felt so blessed to have him even though his future still hung in the balance.

That night the local chaplain came at our request to christen Lewis. He was surrounded by immediate family who all loved him very much, and the short service was very moving for all. Lewis was sedated and remained stable during his first night, so the decision was made to transfer him to Alder Hey Children’s Hospital Liverpool the next morning in preparation for his surgery. We knew all about ECMO and nitric oxide and were so relieved that Lewis was stable, needing oxygen only, and the transfer took 40 minutes without any problems. As soon as Clare was discharged, we rushed over to be with Lewis, and the nurses looking after him said that the surgeon was happy to repair his diaphragm the next day. We settled into our room at the Ronald McDonald house that evening and prayed that everything would go smoothly. The next day Lewis was wheeled down to theatre at 4 pm. It was so emotional watching our son being taken away, not knowing if we would ever see him alive again, although the nurses were very reassuring. Four agonising hours passed, and Lewis finally returned to ICU. He had made it, and the surgeon said that everything had gone as planned and that the defect was large and needed a gortex patch to cover it.

Lewis's honeymoon period lasted 48 hours, and after that, things seemed to improve. He had good blood gases, so they started to wean down his oxygen. Lewis was proving to be a little fighter, and we were both so proud of him. Apart from being a little jaundiced, he looked settled. Feeding started on 5 mls of breastmilk every 3 hours through the use of an NG tube. He tolerated it well at first, and it soon went up to 40 mls. Lewis continued to do well, and on day 6 of his life, the doctors decided to try him off the ventilator. We were so happy and excited that we might get to finally hold our beautiful son. Our hopes were soon dashed as Lewis lasted only 12 hours off the ventilator before being put back on. His chest was recessing too much, and his breaths per minute increased. We came to the conclusion that it was just too early for him, but it was very hard seeing him with all the tubes taped to his face again. He so nearly made it to the next step, but we weren't disappointed with him. The doctors told us that he had done extremely well to come this far, and that it was only a matter of time before his lungs would expand enough for him to breath independently.

The next few weeks were up and down. Some days Lewis would appear to be improving, only to find him getting worse the next day. Desaturation became a major problem some days, as did distention of his stomach. He also caught an infection from his central groin lines, a combination of all these problems ended up with Lewis's oxygen levels increasing. It was really depressing watching all the other sick children come and go while we still came day after day to be with Lewis. We had to be patient; the doctors kept telling us, “It just takes time.”

On the 9th February, Lewis's condition started to deteriorate. His stomach would suddenly fill with air and distend, putting pressure on his already immature lungs. This made it really hard for him to breath. His feeds had stopped because of severe vomiting, and as a result, he was put on TPN. The nurses had to keep aspirating the air every hour or so by a syringe on the end of his NG tube. Seeing the pain in his face was really upsetting. He hated it when the pysio's cleared his tube with suction. He would lash out, and his sats would drop. I remember one day when his oxygen input was at 100%, and he was doing very little breathing on his own. The doctors told us there was a possibility of pyloric stenosis or malrotation of the stomach, which would have explained the vomiting and stomach distention. Lewis had an ultrasound scan which looked normal; we were so relieved, but the problem still couldn't be explained. They gave Lewis a Barium Dye Test, which showed that there was an obstruction in his tummy, and that it seemed to move in spasm, which explained why he was so uncomfortable. The surgeons decided to operate on Lewis again, but the operation would carry a risk of infecting his patch. We really didn't want him to be operated on again, but this was the only way they could help him.

During the operation the doctors found that Lewis had a kinked duodenum because his stomach was lying abnormally and that he also had a lot of scar tissue adhesions. After finding the cause of the problems, they then straightened his duodenum and removed the adhesions. They also fitted a broviac line into an artery in his chest. After 6 long hours, we were able to see our son again. He hadn't tolerated the surgery as well this time, and he looked grey and lifeless. The doctors told us that despite how he looked, the operation had gone well, and that he was now on less oxygen than previously (55%).

Over the next few days, Lewis slowly recovered, his bowel and stomach had been handled so much that they temporarily shut down to recover. The colour of his stomach acid was checked regularly and changed from dark green to pale yellow, which was a good sign, and as soon as it changed to yellow, feedings started again. During the week following his operation, Lewis made a speedy recovery, which was a shock to us all considering he had been so ill the week before. We could hardly believe that just one week post-op, he was saturating at 100% without any help. It was such a big step after four hard weeks, and amongst all the joy, we both prayed that he wouldn't have to be reventilated.

On Friday 22nd February 2002, Clare and I finally got to hold and cuddle our son for the first time ever. He was so peaceful and settled, it was an unforgettable experience, and we both felt so overwhelmed and lucky to have him in our arms. That day Lewis was transferred onto a ward where we all started to get to know one another. He started to increase his feeds, gained weight, and finally got rid of all his tubes and lines. The week spent on the ward was a completely different experience to being on intensive care. We finally felt like parents to a newborn baby. Lewis was discharged from hospital on March 4th 2002, and it couldn't have been a better day as it was my birthday. It was the best birthday present a father could ever have. The three of us were now a proper family, and Clare and I were very excited to get our son home 5 weeks and 4 days after he was born.

Lewis has been home now for 8 weeks, and so far there have been no major problems. He doesn’t seem to suffer from reflux, and apart from being a snacker and having pretty bad colic, he feeds quite well. Although he's gaining weight at a good pace (about 1oz per day), he is small for his age at 10 lb 3oz, but we are hopeful that he will eventually catch up. He's had three colds since we came home, and Clare and I have been really anxious and worried but they haven't seemed to bother him any more than any other baby. His scars have healed really well and are shrinking as he gets bigger, and he is right up to date with his development. All in all, Lewis is a very alert 3-month-old who enjoys playing on his activity gym. The whole family loves him to bits, and he is a very spoilt baby but with good reason. Both family and friends, especially the grandparents, can't believe how well he's done, and we all cherish every moment with him. We thank god for letting us keep hold of our son. Clare and I believe he is truly a miracle, and we are so grateful to have him in our lives today.


Written by Lewis' parents, Mark & Clare Kelly (Great Britain)

December 10 - Dear Nicholas Sparks (Guest Blogger Laura Edmiston)

Dear Mr. Sparks,

Although my pregnancy was nothing to brag about, I did have my problems. I felt like even though this was my fifth child (all of whom have had no problems either with the pregnancy or birth and all have been healthy children), I did have problems. I felt huge, and they said the baby was normal size. I went into labor early twice; both times they stopped it. I had 2 sonograms, one at about 2 months and another at 5 months and both looked normal. Even so, at 37 weeks, Joey was born. At first they said he was just having problems breathing, and after a few hours in NICU, he would be back with me. That sounded OK to me since 7 years ago, my daughter was born after a great pregnancy and had problems breathing and was fine after a few hours.

Four or five hours later, the neonatologist came in and said they had to talk to me about Joey. They said he had CDH and possibly had to be flown to Phoenix (two hours away) to be put on ECMO. I had honestly never heard of this, even though I had been a surgical tech for a few years! I wasn’t sure what this was, and the doctor explained it to me, but it still made no sense. All I wanted was to hold my baby and go home.

After two days, the doctors said Joey was doing better and probably wouldn't have to go to Phoenix. I was so thankful. I left that day (two days after he was born) thinking he would be OK. Three days later, after going to the hospital everyday in between taking and picking up my other three children to and from school, the doctor called and said they did have to fly Joey to Phoenix that afternoon. I was so upset that I could hardly drive back to the hospital.

Later that day, Joey left on the helicopter (with his three sisters and brother and me and his grandma saying goodbye) to go to Phoenix. His oldest sister Sky (18 years old) and I went up later that day. When we got there, he was already on ECMO.

Joey stayed on ECMO for 10 days. On his littlest sister’s 7th birthday, they told me that the next day they were going to do his surgery. I was so happy, but at the same time scared. I just hoped he made it through the surgery. His sister said that was the best present she got for her birthday, to tell her baby brother he was having surgery and maybe coming home soon. I wanted to cry. She was so hopeful; so was his brother CJ (age 5). CJ never once thought anything bad would happen to his brother.

Well, we were one of the few truly blessed families. After surgery, Joey came home to Tucson two days later, and after another seven days he came home to us.

Other than the fact that he nurses every two hours, he is absolutely perfect and is his mommy's little miracle baby. We all love him and pray for any other family with a baby born with this defect. We were lucky, and we know that most of the babies and their families aren’t this lucky.


Written by Joseph's mom, Laura Edmiston (Arizona)

December 9 - Dear Nicholas Sparks (Guest Blogger Catherine Taylor)

Dear Mr. Sparks,

My name is Catherine Taylor and I'm a mum. It seems funny to say that when I've never changed a nappy or had to get up in the middle of the night to that all familiar cry, but six months ago I did become a mother for the first time. My baby is a little girl and her name is Mersayd.

We discovered our precious angel had CDH at six months in utero. To say my husband and I were shocked at this diagnosis is an understatement. To be told that your baby has an abnormality is just not something you expect to hear! That happens to other people not us!! My first reaction was guilt – “what have I done?” but we were reassured that it was “just one of those things..”. With this diagnoses I was immediately referred to a specialist in Tauranga and then an Obstetrician in Hamilton. The next few months were a blur of more scans and check-ups. We were told that our baby had a 50/50 chance of survival but I was determined to be positive and I did not want Mersayd to feel any bad vibes. I think back now to that time and wonder if I may have been a bit naive but I truly and honestly did not expect Mersayd to die. I bought everything. The nursery was complete. The drawers were full. The crib was ready.

The obstetrician gave us the option of induction or c-section at 38 weeks but Craig and I decided that the less stress on Mersayd the better, so we chose the c-section.

The big day arrived and I was scared. After a sleepless night we arrived at the hospital but were told due to unexpected complications with another newborn, Mersayd's arrival was to be postponed. I felt so relieved.

Craig and I wondered, with this turn of events, what to do next! We decided to have a bit of fun, so the three of us had a trip to the Hamilton Zoo. We had a great day. I have always believed things happen for a reason and I truly believe we were given that extra day to spend with Mersayd. It is a special day I will never forget and I hope we can visit the zoo again on Mersayd's anniversary.

The next morning I was feeling allot more relaxed as I lay on the operating table (maybe it was the drugs!). There were so many doctors and nurses in theatre - some to assist me but most waiting for the big arrival of Mersayd. As soon as she was born I remember her sailing past me and onto the OHIO table. She was immediately intubated and whisked away to the NICU accompanied by her Dad.

I was stitched up and taken back to the recovery room. Craig joined me with Polaroid’s of Mersayd. He informed me things weren't good. I refused to believe it.

A couple of hours passed. The Paediatrician came to see me with the bad news. The hernia was far worse than predicted. Mersayd's lungs were tiny nodules and one had ruptured.

Numb with shock I was pumped full of morphine and wheeled up to see my wee fighter for the first time. I know all parents think their babies are beautiful but mine truly was. Except for all the lines and tubes attached to her; Mersayd looked like any other healthy, bonny bundle. She looked peaceful. It was hard to believe she had only moments to live. One of the nurses asked me if I would like to hold Mersayd and I said yes. She was placed gently in my arms. I have never been one for babies but I felt so confident holding her. It felt right.

I didn't cry when Mersayd died. I feel guilty about that but I think I must have been in shock. The reality of the situation didn't really hit me till a few days later.

If someone had told me a year ago I would be planning my baby's funeral I wouldn't have believed it. But here we were sorting out readings and music to be played. We chose 'The Power of Love' by Celine Dion, 'Angel Song' (my favourite) by Sarah MacLaughlan and 'Whenever God Shines His Light' by Van Morrison. We decided to not only have a service to say farewell but to also celebrate a life that although short; touched so many. We also let everyone there release a pink or silver balloon at the cemetery as a final goodbye. It was such a terribly sad day.

So now six months on not a day goes by when I don't think about Mersayd. I wonder does she know how much we all love her and how truly wanted she was? I feel envious when I see other mothers with their babies. I hope they know how lucky they are.

To lose a child, especially one that has not had a chance to experience life is hard. There is no one to tell you why this has happened or when the grief will pass. I have since joined SANDS and that has helped. I have found talking about Mersayd is the best therapy. Craig and I have also had lots of support from our family and close friends. Even strangers have shown genuine concern and great kindness.

But still, I wake up every morning missing my baby and wondering 'what if?' and 'why us?'. But still, tears come to my eyes at the mention of her name. But still, most of all, I can't forget I am a Mother.


Written by Mersayd's mom, Catherine Taylor (New Zealand)

December 7 - Dear Nicholas Sparks (Guest Blogger Charlotte Pajatin)

Dear Mr. Sparks,

During our ultrasound at age 20 weeks, Baby Liam was diagnosed with a severe Congenital Diaphragmatic Hernia. CDH occurs in about 1 in 5,000 live births. It occurs when the diaphragm does not form properly and as a result, some parts of the abdominal organs moves into the chest that affects the lungs to develop and grow. As to what causes CDH? our doctors said it was an accident by nature. Our baby boy was given less than 10% chance of survival. We were given an option to terminate the pregnancy but we chose not to. With our strong faith in God and our faith in our son Liam, we continued with our pregnancy. And as parents, we just felt like it's so wrong to just give up on our baby without giving him a chance to fight for his own life. Since then, we had doctors' appointment twice a week. And as our due date got closer, Liam's situation worsened. He was too small for his age, his heart was too weak, he didn't have enough lung tissues to basically breath when he gets out, and that he might not even make it out from the resuscitation room after birth. We were heartbroken but our faith remained unshaken. Doctors decided to induced labor at 38 weeks, we were in labor for 3 days until baby boy Liam came out August 6, 2013 through normal delivery. Liam was so strong, everybody predicted I was going to have a c-section because his heart was too weak, but our baby boy made sure he came out through normal delivery. He was taken away from us immediately. We never got the chance to hold him, he tried to cry but his lungs were underdeveloped we never heard him cry. We waited for an hour after delivery and it was one of the best news we had, he made it out from the resuscitation room when everybody doubted he will. He was then sent to the NICU, and for 24 hrs he tried to fight for his life. August 7, 2013, we were faced with the biggest decision of our life, doctors said his stats were going down and he wont make it for one more night. He was just too weak already. We decided to just hold him in our arms until he passed. We know Liam wanted to get to know his Papa and Mama before he reunites with the Lord. It was the most painful, but we know Liam were able to feel our love and warmth. Liam was a warrior, he knew since he was inside that we were fighting for him, that's why he really fought so hard when he came out. We wanted to see him, we were so excited to be with him and so was he. Liam is now an angel but he will forever be in our hearts. Liam has taught us the value of life. And we will forever be grateful to God that we were chosen as Liam's parents.

Written by Liam Tapia's mom, Charlotte Pajatin (CA)

December 6 - Dear Nicholas Sparks (Guest Blogger Jessica Jarrett)

Dear Mr. Sparks,

Hayley was born on the Fourth of July 1995. She was diagnosed at 36 weeks gestation when we had an ultrasound to determine position. Incidentally, Hayley was breech and delivered C-Section after my water ruptured at 38 weeks. We were completely prepared for all the possible outcomes by the doctors at the University of Washington Medical Center where I would deliver as well as by Children's Hospital's staff who would care for Hayley once she was stabilized and transported. We were lucky to tour both facilities and had time to ask lots of questions. I am happy we did not have more than these two weeks for preparation because the waiting and wondering once we had a diagnosis was very difficult.

The night Hayley was born was as smooth as we could have hoped. The whole team of all her doctors were assembled and the actual C-Section was uneventful. Hayley of course was whisked away immediately to be intubated and stabilized. She was not able to breathe on her own at birth. My husband, Andy, was able to see Hayley about an hour after her birth. About three hours after her birth they brought Hayley to me in recovery room all ready for transport. I could touch only her fingers through the portable incubator. The next 24 hours were the hardest. I was in one hospital and Hayley another. Hayley was fairly stable through the night but started failing the next day. The team tried switching Hayley from a ventilator to a high velocity oscillator. When that did not help, they tried nitrous oxide gas to attempt to relax the hypertension in Hayley's lungs and improve her oxygen levels. Finally when Hayley was 24 hours old it was decided to put her on ECMO to save her life. Hayley had a smooth 17 day ECMO run. Her hernia was repaired while on ECMO on the 12th day. Following ECMO Hayley required about 10 more days of ventilation and about 3 weeks of nasal c-pap. Since that time Hayley has needed small amounts of oxygen (.2-.5 lpm) and occasional nebulizer treatments to breath comfortably. When we left the Infant Intensive Care Unit when Hayley was 8 weeks old she was stable in a respiratory sense but had several feeding battles to overcome before coming home at 7 months.

Hayley had gastric emptying problems and severe reflux. She required 5 different surgeries to correct her gastric problems and to begin oral feeds. This included surgery to correct her malrotated stomach, straighten her contorted duodenum, a pyloromyotomy to help gastric emptying, and a Nissen fundoplication to stop the reflux. As you can imagine after all of this Hayley was very orally aversive and developmentally delayed.

Today, we are proud to say Hayley is making incredible progress. She requires a small amount of oxygen (about .2 lpm) which she hardly seems to notice. Hayley is playing with both hands in all the ways expected for a child her age i.e., throwing things off the high chair, opening kitchen cabinets, playing "So Big". She is also pulling to stand, bouncing and traveling in her walker. Eating continues to be the most challenging area for Hayley and I. She takes about 1 tsp. of baby food a couple of times a day by mouth with lots of encouragement!! She also enjoys a pacifier. Otherwise, Hayley is getting her nutrition via a gastrostomy tube (about 8 oz 4 times a day). We are grateful for every small step. Hayley loves to look at books, to pet her dog Issabo, and to watch Barney! She hardly ever cries (unless eating) and loves people. We feel very blessed to have our little girl with us.

Written by Hayley's mom, Jessica Jarrett (Virginia)

December 4 - Dear Nicholas Sparks (Guest Blogger Tari Jocobs)

Dear Mr. Sparks,

My name is Tari Jacobs. Our son Brad was diagnosed with CDH shortly after his birth January 16, 1998. Robert and I were married 6 years before we decided to start our family. We are both very healthy individuals and did not expect anything to go wrong with my pregnancy. My pregnancy was relatively normal. I was put on phenergan due to severe nausea that I was experiencing. I had two sonograms during the pregnancy and they both showed that the baby was developing normally. My due date was January 9, 1998. I was induced on January 16, 1998 at 8:30 am. I had an uncomplicated labor. Brad arrived at 5:12 pm and at first appeared to be normal. He weighed 9lbs 2 ounces and was 21 ½ inches long. He had a head full of dark brown hair. When the cord was cut he was having a difficult time breathing. The doctors thought that he had fluid in his lungs so they took him to the nursery to see if they could suction it out. He was still having a difficult time so they moved him to the level 2 NICU and did an x-ray on his chest. It was determined that he had CDH. His heart was moved over just slightly and it looked like he didn't have much of a left lung. The doctors came back to our room and told us that Brad had CDH. This was a complete shock to both Robert and myself. Robert and I were familiar with what CDH was because, Robert's sister had a baby 18 years prior to Brad's birth who also was born with CDH. (Their baby Jeremy did not survive.) I was also familiar with CDH because in college I had done a written an oral report on CDH for a class that I was taking. I surprised the doctors when I asked if they were going to have to put a gortex patch in Brad to repair the hernia. They told us that Brad had a 50% chance of surviving. If he went on ECMO the chances dropped to 30% and if he did survive he would probably have other complications i.e.: respiratory problems, feeding problems etc. We told them to do whatever it took to insure that Brad would survive. They had to transfer Brad to another hospital that had ECMO. They brought Brad back to my room so I could kiss him good-bye before he left. By this time they had already intubated him and sedated him. My husband followed Brad to the other hospital and stayed with Brad. It was difficult for Robert to leave me there because I had lost a lot of blood after having him and they thought that they were going to have to transfuse me. Brad was on a conventional ventilator for the first night in the hospital. He was in very critical condition but was holding on. In the morning Robert came back to the hospital to see me. (We had recently moved to Texas and had no family in Texas. My mother lives in Hawaii and was not able to get a flight until later in the week. Our friends from Denver flew out that morning to offer support to Robert and I). When Robert arrived he said that it didn't look good for the baby. He brought me a picture of him and I remember just crying and wondering why and had I done anything wrong. I called the hospital and spoke with the surgeon who would eventually operate on Brad. He said Brad was holding his own. Around 8:30 that night the doctors called to say that Brad had taken a turn for the worse and they wanted to put him on ECMO as a last resort. They needed our signatures. Robert left the hospital and rushed over to be with Brad. My doctor had given the ok that if Brad took a turn for the worse that he would release me early so that I could be there to hold him and say good-bye. I was released about twenty minutes after Robert left. I arrived at the hospital and they had decided to put Brad on an oscillating ventilator. The ECMO team was there just in case. At about 5 am Brad had stabilized and they told Robert and I to go home and get some sleep. At 8:30 am the surgeon called and told us that they wanted to operate on Brad. ( He was just a day and a half old) We rushed back to the hospital and met the surgeons and signed the papers. The surgeon told us that Brad was a fighter and he was going to make it. They had to shut down the NICU so that they could operate on Brad. He was too critical to move to an operating room. During the operation one of the ECMO team members came out to let us know that the surgery was going very well and he did not have to be put on ECMO. The surgery took about 1 ½ hours to repair the hernia. The surgeon came out and said everything went great. He was able to repair the hernia with sutures. They did an x-ray after the surgery and they were very surprised to see that Brad had an almost full lung on the left side. His right lung was at the eighth rib and his left lung was at the seventh rib. He continued to do well throughout the week. On that Friday they had to put a broviac line in him because they could not get a good vein for him to receive his meds. On Super bowl Sunday (we are very big Bronco fans) Brad pulled out his ventilator. The doctors finished extubating him and we were there for his first real cry. What a joy! They put a canula on him to help him with his breathing. He only had to have the canula for two days. He had to wait 48 hours before he could be fed breast milk. He took to breast feeding very well but when he was fed breast milk from a bottle he would spit it all back up. The doctor's were concerned with his spitting up and gave him meds to help with the reflux problems. He spent the next 2 ½ weeks in the hospital until he could tolerate his feedings. Finally on February 9, 1998 he came home. No oxygen, no feeding tubes. He thrived when he got home. He continued to be breast fed and we had no problems with him spitting up so his pediatrician took him off all meds. The only problem we did experience was at the surgery site. He started to get granulomas at the ends of his scar. We took him back to the surgeon and he ended up having to go in and remove the sutures because Brad was having a reaction to them. By this time he had already healed so it was not a problem. Brad is now a year old and we are happy to report that he has no problems. He is developing normally, he eats extremely well, and is a happy, healthy, beautiful one year old. He amazed all of his doctors and us at how well he did with the surgery and with experiencing no other complications. After his last x-ray at 9 months old everything appears to be normal. They have told us that we do not need to worry, he is a normal little boy who can do anything little boys his age can do. He is the light of our lives and we feel so blessed to have him here. It amazes us every day to see how well he is doing. There is hope. Never stop believing. Thanks so much to all of the wonderful doctors, nurses, and surgeons who helped Brad to be our Miracle Baby. His name: Bradley James Makanaokalani translated means "The gift from heaven" He truly is our CHERUB...a gift from heaven.


Written by Bradley’s mom, Tari Jocobs (Texas)

December 3 - Dear Nicholas Sparks (Guest Blogger Ed Swartz)

Dear Mr. Sparks,

Jill and I left to meet Jill's obstetrician, Dr. Ruggiero, at Lourdes hospital in Binghamton, NY. When we arrived we found that Jill wasn't close to delivering. A few hours later, Jill's other obstetrician, Dr. Canino, arrived and put her on Pitocin to induce labor. Contractions came on stronger and more frequently after that. As soon as the baby arrived, Dr. Canino flipped it around and announced that we had a baby girl. Dr. Canino placed her on Jill's stomach, and I cut the umbilical cord. We named her Alisha after her grandmothers Alice and Sharon. Alisha was born at 12:27PM, about seven hours after we left for the hospital.

As soon as I cut the cord, my first concern arose. Alisha didn't cry, at least not like I had seen my two sons cry. Our head nurse started bagging Alisha as she appeared to need a little help breathing. I stopped video recording at this point as I sensed something wasn't right. The nurses took Alisha to the nursery, and Dr. Canino followed.

When I arrived at the nursery, all the blinds were down. It stopped me in my tracks. I caught Dr. Canino's eyes through the blinds, and they were wild in fear. I felt I should leave the area. I stopped momentarily in the waiting area between the nursery and the birthing room to collect my thoughts as to what to say to Jill and Alice. The intercom announced, "Code Blue Nursery". I knew this call was for Alisha. A moment later, an urgent call "CODE BLUE NURSERY". My heart sank as I sensed we were loosing her if we hadn't lost her already. I returned to Jill and her mother, Alice, and told them that something was wrong, but that I didn't know what. Dr. Canino arrived at this point and informed us that our baby wasn't breathing on her own, and that I must see the baby even if it was through the blinds of the nursery. I did so. As I watched, Dr. Canino came to the window and mouthed, "Better" which meant they were getting a heart beat and they were getting oxygen in her. Soon Dr. Canino came out, and asked that I return with him to the birthing room. Dr. Canino proceeded to tell Jill and I that Alisha was a very sick baby. She had a hole in her diaphragm. Her intestines came up through the hole, pushed the heart to the right side of her chest cavity, kept her left lung from developing and constrained her right lung. This was preventing the proper oxygen level from entering her blood stream, and her heart was working too hard to make up for it. Dr. Canino insisted that both of us walk to the nursery to be with Alisha.

When we entered the nursery, we noticed our children's pediatrician, Dr. Szkodzinski, on the phone. Someone explained to us that he was making arrangements to have our daughter flown to Crouse Irving Memorial Hospital in Syracuse, NY where they could better care for Alisha's defect. Alisha was blue and cold from lack of oxygen. Nurse, Nancy Jardine, pumped for over an hour and a half, and got her heart rate and blood pressure to better levels. Around this time, respiratory therapist, Pam Ryman, and nurse, Nancy Forsyth, arrived from Syracuse via helicopter. Jill and I were asked to leave the room as they intubated Alisha. Neonatologist, Dr. Yoss came out with the unenviable duty of informing us of the severity of the situation. He said that while in Syracuse, Alisha would be on a ventilator to control her oxygen supply. If this didn't work, they'd put her on nitric oxide which carried some risks such as deafness. If this didn't work, as a last resort they'd put her on a heart/lung machine called ECMO. If on ECMO, she'd be on it anywhere from a few days to up to three weeks after which she'd either be recovering or will never improve. Around 5:30PM, Jill and I bid Alisha farewell. I kissed Jill goodbye after taking her to her private room at the end of maternity. Her mother remained with her. Jill had to stay because she had to heal some, and she needed monitored to ensure there was no post delivery infections.

I went home, and explained to my sons, Christopher and Matthew, that Jill delivered them a baby sister that was very sick, and that Mommy was just fine. I also explained to them what a diaphragmatic hernia was. Christopher, age 8, understood. Matthew, age 3, didn't quite get it at this point.

When I arrived in Syracuse around 8:30PM, my worst fears were reality. Nurse, Nancy Forsyth saw me arrive, and informed me that they were preparing Alisha for ECMO. Alisha did not take to the ventilator alone, nitric oxide didn't help, and the last resort was all that remained. I was introduced to Dr. Hingre, who informed me that this defect is often diagnosed ahead of delivery through ultrasounds. Jill had level-one ultrasounds at 18 and 22 weeks, and the defect was not observed. He informed me that diagnosing it ahead of time would be of little good, except to prepare us for the events to come. While in NICU, I positioned myself at the rear of the nurses' station in view of the ECMO room. The sight was simply awesome. The 15' x 20' room was crammed with about twenty people. The lights were out, and it was dark except for a couple flashlights and Alisha's table. There, four feet off the ground, lay Alisha on her back like Snow White sleeping in her bed with the light shining on her. She was so tiny. The scene was intense, and I felt so helpless 30 feet away.

When the lights came on, Alisha was on ECMO, and the whole nursery breathed a sigh of relief. Pediatric surgeon, Dr. Nicholett, informed me at my asking of the long-term risks associated with the road to recovery from a diaphragmatic hernia. She informed me that lungs, even constrained and undeveloped lungs, grow over eight years. She informed me of the risk of asthma during that time. She informed me of digestive problems associated with the hole in the diaphragm. Alisha would be in the hospital a couple months before she'd improve enough to go home. In the short term, she indicated that they'd wait several days before performing surgery on her for her hernia repair so that her heart got stronger and her lungs got better oxygenated.

Shortly after lunch the next day, Jill arrived from Binghamton. She was discharged that morning from Lourdes hospital, the day after delivering Alisha. She was in pain and bleeding, and she should not have been walking around, but she really needed to see Alisha. Her visit was brief, but very important to her, and she returned back to Binghamton to heal and provide our boys the attention they needed. Our plan for the next two weeks was for me to stay with Alisha during the week, and for Jill to bring the boys to Syracuse on the weekends to visit. We planned to switch roles after that, presuming that Jill was healed by then.

A few days passed uneventfully. Saturday morning, just before Jill and I left for the hospital, I received a call from Dr. Nicholett indicating that Alisha's hernia repair was moved up from Monday to that day at 1PM because her conditions were right, and a good staff was assembled. By 1:20, a procession to the operating room (OR) started. Her primary team of doctors, surgeons, nurses, and ECMO staff walked in step. Security had cleared the halls, and they had removed the carpet on the first floor to ensure that none of the casters on the equipment snagged during the route. About three and a half hours later, Alisha's team came back in similar fashion to how she left. There were more smiles this time. Dr. Nicholett briefed us a little later. Alisha had a very stable and uneventful surgery. She had virtually no diaphragm on the left side. She attached a Gortex patch to whatever tissue was available.

The next morning, Sunday, Dr. Nicholett called to state that the ECMO circuit was clotting, an effect from the previous day's surgery. A circuit replacement was necessary. By 11:30, the procedure was started, and an hour later it was completed with no complications.

The next few days went very well. Alisha was awake a lot, and she moved her hands and legs. She looked a lot like her brother, Matthew. It was at this time that I realized how beautiful she was. Her eyes really brought it out. They were big brown eyes, and they made me realize how much life was really there. She tracked my movements, and her reflexes seemed normal. By the end of Tuesday, Dr. Nicholett planned to take her off ECMO in the morning.

I got the call at 9:30AM Wednesday. Alisha's trial off ECMO did not go well. When they took her off, her oxygen levels dropped rapidly. Dr. Nicholett mentioned that I needed to be aware that Alisha may not come off ECMO. I said that she had to. She agreed. Despite the bad news, Alisha looked a precious as ever. Her eyes opened often and her reflexes were good. However, by Thursday, everyone noticed that her abdomen was swelling.

Friday morning, I got a call from a nurse who said that Alisha was bleeding internally, and that I should come to the hospital as soon as possible. When I arrived at the hospital, attending neonatologist, Dr. Bifano, informed me that an ultrasound confirmed that blood was filling her abdomen, and that the situation was very serious due to her being on blood thinners for ECMO. I called to have Jill pull the boys out of school and come to Syracuse. I told her the situation was grave. We met with Dr. Nicholett whom, after consulting with her colleagues, recommended that surgery be performed to find out where the problem was. After an hour an a half, Dr. Nicholett met us upon completion of the surgery and informed us that a bruise on her small intestine had ruptured. The surgeons were able to control the bleeding, but not stop it. So they brought the bowel to the surface to watch it closely. They were not able to remove it as they normally could due to the blood thinners in her system and the associated risk of bleeding. As after the first surgery, the ECMO circuit needed changed again due to clotting. It was completed successfully.

Sunday, Alisha was quite alert, and we took tons of pictures. The boys seemed to enjoy seeing her eyes open. After the boys' visit, I took them back to Binghamton while Jill stayed in Syracuse. After putting the boys to bed that evening, I spent hours scouring the Internet for information on diaphragmatic hernias. I had been without access for the previous two weeks, and I was glad I got on it. There was a lot out there.

The next few days were spent ventilating Alisha's lung in hopes that it would open up. It opened a little each day, leaving some hope despite the previously unsuccessful trial off ECMO.

On Wednesday, Pam Ryman, Alisha's ECMO coordinator informed us that Alisha's lung was not improving as it continued to have a lot of resistance, forcing the blood to be shunted to arteries without being oxygenated. There was concern that her lung passages were in a fixed state and would never take in oxygen. Later, Dr. Nicholett stopped by to state that she and Dr. Marr wanted to meet with us the next day. I knew it was bad news. She stated that Alisha did not take another trial off and that the four of us needed to set a plan. Jill and I needed to leave the hospital to grieve. I called our minister, Reverend Barry Downing and requested that he come up to baptize Alisha. He said that he and Reverend Janet would come up the next day.

The next day, Thursday, was a tough day. Reverend Barry and Janet arrived around 10:30AM for Alisha's baptism in the ECMO room. I felt a sense of wholeness on Alisha's behalf by having her baptized, and I was grateful for having her receive the sacrament. A little later, we had our meeting in the hospital conference room with Dr. Marr, Dr. Nicholett, Dr. Bifano, Pam Ryman and Bruce Searles. Dr. Marr indicated that Alisha's lung had opened the whole way, and that it still wouldn't take in blood for oxygenation. She indicated that they had done all they can do, and that by Saturday, recommended Alisha be taken off ECMO. I had previously asked the doctors about the feasibility of a lung transplant, and I asked them what they found out. Dr. Nicholett indicated that fetal organs are very hard to come by, and that Boston, Philadelphia, Pittsburgh, and several other hospitals would not consider Alisha for transplant as her chance for survival was remote and her quality of life would be dismal. The hospital staff provided us with material on how to spend your last moments with your child, and we read a lot of it. We came to the realization that our dreams for Alisha were shattering. We hadn't lost hope for a miracle, but we knew a miracle was all we had left.

Friday was in many respects, the toughest day. Jill and I invited our parents, brothers, and sisters to come in town to visit Alisha before she died. We explained to our sons that Alisha was not going to live. As the day progressed, I became more depressed knowing that our time with our only daughter was drawing to a close. Jill and I didn't sleep well that night in fear of the events to follow the next day. We were scared as we envisioned a dreadful passing.

Saturday morning, we called Dr. Marr to find that Alisha failed her final trials off ECMO. When we arrived at the hospital, Pam Ryman and nurse, Helen Fisch, suggested that we bathe Alisha which we did with some assistance from Helen and nurse Beth Gibbs. It was a special moment. Then we dressed Alisha in an outfit and bonnet grandma Sharon bought her. Alisha looked precious all dressed up without the tubes and probes. At this point we felt it important for the boys and visiting relatives to see her this way as opposed to how they had seen her earlier. So we invited them in one last time, and everyone was very glad to see her this way. We took lots of pictures and video, and Alisha was very alert and aware of everyone around her. Then, around noon, everyone left and it was just Jill and I with her key hospital staff, Pam, Bruce, Beth, and Helen. Jill held Alisha in a rocker. I sat in a rocker next to her and held Alisha's hands and stroked her face as she was weaned off ECMO. The experience was very peaceful and nothing like the horror we imagined the night before. For about an hour, Alisha looked at us, gripped our hands, and rested with us as her blood pressure and heart rate slowly decreased and her body cooled. Jill and I cried hard, told her that we love her and will miss her, and bid her goodbye. It was an hour we'll treasure for the rest of our lives. At 1:27PM, Alisha's heart slowed to a stop.

Alisha died of pulmonary hypoplasia resultant from congenital diaphragmatic hernia. We had her cremated. We had a memorial service for Alisha the Saturday following her death. During the week, I prepared a photo album of the many pictures we had taken of Alisha during the nineteen days we were with her. I thought this would help put life to the name for the many people who attended Alisha's service, but had never seen her. Alisha's memorial service was difficult, but very beautiful. It's been two months since Alisha's passing. Our family thinks of her and views her photo album often. The healing is taking place albeit slowly. We love Alisha, miss her very much, and look forward to the day when we see her in heaven.


Written by Alisha's dad, Ed Swartz (New York)