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 26 - Dear Nicholas Sparks (Guest Blogger Nancy Kowalski)

Dear Mr. Sparks,

I was pregnant with my second child in the summer of 1985. The movie E.T. had just been released to video and there was a resurgence of E.T. dolls and toys, much like this year with the movie’s release. My husband and I were on the boardwalk at the Jersey Shore, and he won one of those E.T. dolls on a chance wheel and gave it to me. Suddenly, the strangest feeling came over me, and I could not look at or hold that doll. My husband laughed, but I said it made me think of a deformed fetus, and being pregnant, I found that very disturbing.

My son, William, was born in November of 1985, with a congenital diaphragmatic hernia. It was not diagnosed during the pregnancy. In 1985, ultrasounds were not done routinely on healthy low risk 27-year-olds. I still believe that on some subconscious, sixth sense kind of level, I knew something was not quite right with this baby that summer.

I found the CHERUBS web site only this year, while searching for some information on scoliosis in kids who had this CDH defect. I found little, but as I read the stories of all the parents and children here, tears filled my eyes and still do, even as I recall sixteen years later the birth of my son.

William was born by Cesarean section at a community hospital in Northern N.J., where we live. The obstetrician did the C-section for fetal distress, as they were having difficulty with the fetal heartbeat on the monitor. Because it was a C-section, my pediatrician was present. As the baby was removed, there was no cry, and the pediatrician took him to the table to examine him. He was able to get air into my son, but my son would not breathe on his own. Minutes later, an X ray was done. As I was in recovery, the obstetrician came to tell me that my son had a congenital diaphragmatic hernia. He briefly described this defect to me. I, as a pediatric nurse, had a good understanding of medical problems but had never heard of this. I asked if he was going to be okay. The doctor said he did not know. My pediatrician had called in a pediatric surgeon. The pediatrician was with my son the entire time, making sure he was getting air and oxygen to his brain.

The pediatric surgeon came to talk to me and my husband while I was still in the recovery room, and told me a team from Columbia Presbyterian in NYC was coming for my baby. The team from the NICU at Columbia arrived about an hour, maybe two, after my son was born. They brought him by so I could see him, and then whisked him away. My husband also left to go to Columbia with our son. I was given lots of medication and was quite snowed. I heard later that there was a traffic jam on the George Washington Bridge as they were crossing it.

Late that night, I got a phone call from my husband, Jim. He told me that Bill had made it through the surgery, but was still in critical condition. He had been talking with many of the team from Columbia and tried to fill me in on all the information, but we were both still numb with shock. I tried as hard as I could to talk in my medicated state, and I recall my mouth being so dry I could hardly form any words. We would talk again in the morning.

At that time, ECMO was considered still “experimental.” Dr. Charlie Stolar, one of the pioneers of ECMO, explained it all to us, and we had to sign a consent form that was about ten pages long in case of respiratory failure for which ECMO would be used. We did, but our son was not in need of it.

Of course, our story is very long, because our son is now sixteen years old, and we have had to face many obstacles along the way. We brought our son home in time for Christmas that year. He has had reflux and has not been a great eater. He has not required any feeding tubes but does still eat slowly, needs smaller more frequent meals (lots of snacks) and is smaller than his peers. He has had a total of five surgeries for things related to the CDH – once for adhesions, once for a rip in the original repair, once for a gallstone which was probably due to the TPN feedings, and for a pectus excavatum (concave chest) repair. Now we are facing scoliosis surgery, to take place this summer.

His most serious problem is the pulmonary hypoplasia. His lung function is at times poor, and he also has asthma, although the asthma has improved a lot over the past year or so. I still listen for his cough at night and still check him more often than I do my older daughter. We still see the pediatric pulmonologist at Columbia regularly. I asked him recently if he could just transplant one of my lungs to Bill. He said it could be done, but that Bill is not even close to needing that.

I remember the day we brought Billy home, in December 1985. The Director of Pediatrics sat down with us and asked us to talk about all we’d been through. Then he told us to take him home and love him just like any other kid. I also remember the morning after he was born, when I learned that he had lived through that first night, I decided that if he could go through all that then I had to do everything possible to give him the absolute best that I could. I started using the breast pump so that I could breastfeed, and I did for nine months.

We have been so very, very lucky to have Bill but also have had some very difficult mountains to climb. Somehow I thought that when I brought him home that first time, it was all okay and would be from then on. Of course, I was wrong. Over the past years I have come to accept that there will always be higher mountains with Bill, harder times, more worry and heartache. And, of course, he is so worth all of it.

I should say that Bill has a very typical teenage life. He is a sophomore in high school, an honor student, and wants to go into biomedical engineering. He is in the band, tried out for the fencing team but got cut. He bowls, builds things, plays video games with his buddies, and takes his little boat out on the lake in the summer. He argues with me all the time, especially about his independence, and tells me that I hold him back. He knows I worry about him. I know when he sleeps over at his friend’s house, the next day we will be using the nebulizer, and he’ll probably be coughing. I wake up in a near panic still when he coughs at night. I take him out for driving lessons. I worry about everything.

Of course, as all mothers of cherubs must know, every bit of heartache is so much more than worth it. Bill and I share a sense of humor and we watch movies together and his smile and laugh just make my life worth living.

I found this site as I was looking for information on scoliosis and CDH. Although my cherub is much older than most, I remember when he was a baby, it was so difficult for me to imagine the future – him as a teenager, going to high school, learning how to drive. I was always somehow afraid we might not see it.

Written by Bill's mom, Nancy Kowalski (New Jersey)

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 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 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 14 - Dear Nicholas Sparks (Guest Blogger Melanie and Brian Kelsay)

Dear Mr. Sparks,

Madison was born 12-28-01 at a healthy 7lbs, 9 oz. She was a very fussy baby and the doctor said it was just what some babies do. She never liked to bed held against you she would just cry. When she was about 2½ months old, we started the day off as usual. Later that day we had to go out so I put her in her car seat and everything seemed fine. Then out of the blue she started crying. She wouldn't stop, so we went home. I thought maybe she had gas because her tummy felt like it was tightening up a lot. I gave her some gas drops and that didn't seem to work. I then gave her some water thinking maybe it was constipation. When my husband came home about a hour later, she had gotten to the point where she wasn't really crying any more. She was more like gasping for air, so we rushed her to the Emergency Room in the next town over. At first, the nurse was pretty rude telling me she was dehydrated and was trying to give her water (which she was spitting back up) about 5 minutes or so later. They thought she looked a Little blue around the mouth and me and my husband thought she looked a little pale. They put something on her toe and decided from there they would give her oxygen. They then took her to have an x-ray. At this point, we didn't know what was going on. They came out and went straight to the phone to call a doctor to come in right away. The nurse during all this was asking my husband how I treated my daughter and if I seemed to be stressed with her (trying to insinuate that I did something to injure her). When the doctor came, he told us her left lung was collapsed and they needed to put in a chest tube. They didn't think she'd make it with out it. Then they where going to fly her to Wichita, a bigger city. When they put in the chest tube, it wouldn’t re-inflate her lung like they said it should. I flew with her and my husband had to drive 2½ hours away by car. The doctor looked at her and her x-rays when we got there and said she had a cyst on her lung and it had burst and they would have to take out part of her lung. It was so stressful on her and us. She had to wait till the next afternoon to go to surgery. In the meantime, they used a big needle and removed a lot of fluid they thought was from her lung. When they were finished with the surgery, the doctor came out and said that she actually had a diaphragmatic hernia and that they put her stomach and spleen back through the hole. They also said when they did that, her lung re-inflated back to normal – the fluid they removed was actually formula from her stomach. The doctor said that she was lucky, her spleen was acting as a plug allowing her lungs to develop normally. She was in the hospital for 5 days and then went home. It was hard for a few weeks. My mother came from out of state to help me with her. She didn't want to be held at all – she stayed in her swing most of the time. She got better each day and today is a happy healthy almost 12 month old. She's always smiling. We have a picture of the doctor holding Madison on her bedroom door so every time we go in there, we know how thankful we need to be that he saved our baby.

Written by Madison's parents, Melanie and Brian Kelsay (Kansas)

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 11 - Dear Nicholas Sparks (Guest Blogger Judi Toth)

Dear Mr. Sparks,

I'm retired from the Army (3 years now) and had my son Christopher on February 2, 1989 while I was stationed in The Netherlands. I was a single mom, with no family members there to support me during the pregnancy and also my "nightmare" (they were all in CT). I did have a good network of friends and coworkers and friends from 2 churches I attended. They were my lifeline at the time. 6 weeks before delivery they performed about the 20th ultrasound (I lost track - I was hospitalized 3 different times with contractions) and it wasn't until then that they noticed that they couldn't find his stomach. They thought that it would be a blind pouch, a sealed esophagus, or no stomach. All of which could be surgically repaired. They told me that they couldn't do anything until he was born. They would have a pediatric surgeon on call as soon as I went into labor (which they did). Christopher was born on due day - February 2 after a long labor. They immediately whisked him away from me and out of the room. About 30 minutes later, Dr. Zandfort came back in and tried to tell me about CDH and how that's what Christopher had. I couldn't comprehend it. I just wanted my baby! They told me they had to transfer him to Maastrict University Hospital where they could operate on him. I would be given a few minutes to spend with him before they took him away. I wasn't prepared to see him in an incubator and on oxygen. How could this be happening to him? He looked normal besides all the tubes. The nurse pulled away the blanket covering him and I couldn't see what they were talking about. I told them his stomach and chest looked normal! They told me I could touch him. I did and stroked his little arms. He immediately grabbed my right index finger and wouldn't let go! He squeezed my finger so hard as though he was saying "don't worry Mom, I'll be with you." Shortly thereafter, they came to take him away. As they wheeled his incubator away, I knew deep down in my heart and soul that I'd never see him alive again. I screamed so loud and to tell you the truth, that's when I knew what it was to have your heart ripped out. They took me into surgery to remove my placenta (it wouldn't come out due to placenta acreta -- the placenta grew roots into my uterine wall and wouldn't come out. It was as though it was cemented in place). As soon as I woke up in the recovery room that's all I wanted and screamed for was my baby. They wouldn't listen to me! They spoke a few words of English to me and then in Dutch so I wouldn't understand. What were they saying? Why couldn't I be with my baby? I kept calling for Dr. Zandford. They insisted that I wait 2 hours before they would release me to my room. That was one of the longest 2 hours of my life. Finally, back in my room, Dr. Zandford came back in and explained once again. I wanted to be taken to him. He told me Christopher would be having his surgery that day and that I couldn't see him anyway. He promised me he personally would take me to see him the next day. All day long, I prayed, I asked for updates. Friends visited and prayed with me. My family and friends were calling from the States. Finally, exhausted, they told my visitors to leave about 8 pm. One friend, Lana, would spend the night in my room with me. While she was in the restroom changing I prayed to God again, one on one and told him to do what was best for Christopher. I was letting go and letting God. At about 830, a strange doctor came in the room. I had never seen him before (or after). I took one look at him and immediately knew. When I asked him when, he told me about 30 minutes ago. That's when God took him -- when I let go and let God. There was no sleep that night. My American doctor came to visit along with my minister. The next day it was a steady stream of visitors. They told me they would bring Christopher to me. I wanted him baptized even though I knew he was already in heaven. My minister agreed to perform the baptism. I asked my good friend Pam to bring me a white rose for the baptism. She couldn't find any. But she did find white tulips. He was baptized with a white tulip. My other close friend Jo, who was also my labor coach and mentor, assisted my nurse Marguerite, to dress Christopher in his outfit. She even got him a little gold cross. I was terrified of seeing him and meeting him, after all he was dead. Jo put my fears aside telling me he was my son and that as soon as I held him, I wouldn't want to put him down. How true that was! I got to spend 4 hours with him in my arms. The only time I let him out of my arms was to be baptized. My arms were aching so badly, but I couldn't let him go! Finally I had to. Marguerite had snipped a lock of his hair for me and given it to me. I also had a lot of pictures taken. Marguerite asked me if I wanted to see his scar. That is the only thing that I couldn't look at! The US Army medics arrived finally took him away to Frankfurt for his long journey back to the United States so he could be buried here. I on the other hand spent 8 days in the hospital recovering from the delivery and surgery for the placenta acreta. I'll never forget one of my friends from church, Mary. She came by and we prayed together and she told me "I know how you feel." I yelled at her, "No you don't! How could you possibly know how I feel?" That's when she calmly replied, "Because I've been in your place. I too Lost a child." I felt so terrible for her and yet a little comforted because someone DID know and understand what I was going through. She helped me quite a bit. Finally, it was time to leave the hospital. That was one of the hardest things I have ever done. They had placed me at the end of the hall away from other new mothers. I had to go down that entire length of hall with no baby in my arms. Another part of my heart was being ripped out once again! I made it back to the States and to my family on the 12th. The funeral would be on the 14th - Valentine's Day. John, Christopher's daddy, met me at home (he was in CT throughout the pregnancy) and we made the funeral arrangements together. The evening before the funeral, I was laying down and had a cramp in my leg. Mom massaged it out and I went back to sleep. An hour or so later another cramp. She massaged it again. I went to the bathroom and passed a huge chunk of placenta. I put it in a plastic bag and after calling a friend who is a doctor in Maryland, I went to the emergency room. By this point I couldn't move my legs. They wheeled me into the ER and my mom got her OB/GYN doctor to come in. He examined me and told me I was so infected that if he tried to do a D&C on me it would be like taking a price tag off a piece of wet tissue paper with a blade. I would have to be on antibiotics by IV and admitted. I could only think of Christopher's funeral the next day. He agreed to release me long enough for the funeral. I still couldn't move my legs. To make matters worse for me, the only place they had room for me was in pediatrics! My room had a crib in it! Not for long though! The next morning, after seeing an internist for my right leg at this point, I was allowed to go to the funeral. We had an open casket, much to John's disapproval. But I felt it was important for my family and friends to meet Christopher. I didn't want them looking at a closed casket. I'm so glad I made that decision. So was my family. The funeral went along beautifully and I went back to the hospital. That was the beginning of all my medical problems. Three D&C's and 6 months later I would still have placenta in me let alone all the infections. The cramping in my leg was due to a blood clot that had lodged in my popliteal artery in my leg, behind the knee. I walked around with the clot for 6 weeks before that too was surgically removed. (Which also started the stream of other surgeries.) To this day I still don't know if I can ever have children. I was told to try for 6 months and then they would test my tubes. But John and I broke up by then. I was told that if I had delivered in an American hospital, they would have performed an immediate hysterectomy on me. Dr. Zandford however wanted to ensure that I at least had the chance to try to have another child. God willing, one day I may. If not, I can live with that also. I have been blessed with many children in my life. To include not one, but six, yes six, Godchildren! In the meantime, I was and am always looking to find out more information about CDH. It wasn't until about 6 months ago, while getting into researching angels, did I go looking on the web for cherubs. Lo and behold, the first site that was listed was Cherubs! My heart leapt into my throat! I immediately went onto the site and after reading every page, I contacted Dawn. This was the first mom that I had "met" if you will, that had a child with the same thing that Christopher had. People that I spoke with never heard of CDH (but that didn't mean I didn't tell them what I knew!). I worked at a clinic where newborns would come in every day. It took me a few years, but I was able to finally hold one in my arms. Actually, when my best friend Donna had her son David, is when I held a baby in my arms for the first time since Christopher. I told her it was okay. It wasn't Christopher, it was David that I was holding. That was my breakthrough. Until then, I couldn't even face a toy department to send presents home. I would send money to Mom and she would buy the presents for me. Christmas was extremely hard for me and my family, exchanging presents. But that too got a little easier each year. Each Christmas I go back to Connecticut where Christopher is buried and Put presents under the 2 trees I planted by his headstone (which by the way has a cherub and a tulip on it!). Each fall, new white tulips are planted behind his headstone and in front, crocuses, miniature tulips and daffodils are also planted. I also plant the bulbs in my front yard. Each spring as the flowers come up, I always think of Christopher. A little bit of Holland brought to America to brighten people's day for only a little while thanks to my Dutch baby!


Written by Christopher's mom, Judi Toth (Maryland)

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 8 - Dear Nicholas Sparks (Guest Blogger Jennifer Jenkins)

Dear Mr. Sparks,

When I was 27 weeks pregnant, I went in for a routine checkup, and my doctor was alarmed at the size of my belly. I was measuring around 32-33 weeks, so she sent me to the hospital to have a level 2 ultrasound done, (hoping to find out the sex), and we found out that our baby "girl" had a congenital diaphragmatic hernia. I was hysterical! They immediately sent us to a high-risk doctor, and he explained to us our options. His first suggestion was to terminate the pregnancy. To me and my husband, that was not even an option, so instead he wanted to do an amnio to find out if it was a genetic problem. So we did the amnio, and from there, we were sent to the ECMO coordinator in the NICU. She explained to us what was going to happen when our baby was born and then gave us a tour of the NICU.

I began doctor visits twice a week for ultrasounds to measure the amniotic fluid index and have non-stress tests. In that first week, I was contracting at a regular rate, so my high-risk doctor said we needed to do an amniotic reduction to help stop the contractions. During the reduction, I went into labor, so I was put on meds, and it was eventually stopped, and I was allowed to go home with orders of strict bed rest (not an easy task with a 2 1/2 yr-old at home). My son and I spent our days in my air conditioned bedroom watching Disney movies and taking naps.

I was still having the contractions off and on, so they decided to induce at 37 weeks so that the team of doctors would be prepared for her arrival. Well, Bethany had other plans! She came at 36 weeks. I went into labor at 2:00 A.M. Monday morning and completely denied I was in labor because it wasn't very strong, and I just didn't want to believe it. I felt that as long as my baby was inside of me, then she was alive and with me. At 5:30, my husband woke up to get ready for work, and I was wide awake and in the middle of a contraction. I told him to go ahead and go to work, and I would call him if anything happened. By 7:30 A.M., I knew it was the real thing. So I called my husband and then called my sister to watch my son.

We got to the hospital at 10:00 A.M., and the contractions were definitely there but still nothing compared to what it was like with my first. They hooked me up to a monitor and were convinced it was false labor, that is, until they did an exam. They found that my water was literally bulging and about ready to burst at any moment. I was completely effaced and had begun dilation. They told me to walk around for an hour and then come back. They were afraid my water would break, so they instructed us not to leave the hospital.

We came back at 1:00 P.M., and the nurse examined me again. I had dilated even more, and my water was even closer to being a waterfall. The nurse got my records and knew that our baby was sick, so they cleared out what they call the "Cadillac room" and put me in there. It was like a luxury suite! They treated me like I was so fragile.

They gave me an epidural at 2:30 because they wanted to be prepared for an emergency c-section. At 4:00 P.M., my doctor arrived, and I apologized for not waiting until the induction date. She laughed at me. My labor was now very hard when I had a contraction, but the contractions were still very slow, and Bethany was showing signs of distress. So my doctor gave me pitocin to speed it up. At that point, my mom and hubby were in scrubs ready to go to the OR for delivery, and they had made a bet on what time Bethany would be born. My hubby guessed 6:45, and my mom guessed 6:55. Well, at exactly 6:55 P.M., Bethany Michelle Jenkins was born. I only caught a glimpse of her as they cut the cord and rushed her off into the resuscitation room. She was very gray and didn't even look alive at all. My husband was allowed to go with her, and my mom stayed with me to keep me calm.

I had some problems with hemorrhaging and lost a great deal of blood, but they were finally able to get that under control and stitched me all up. Because of the hemorrhaging, I wasn't allowed out of my bed, even to go see my daughter. So I relied on updates from my husband and the neonatologist.

About 10:00 P.M., the neonatologist came into my room with a solemn face and told me that we needed to start thinking about funeral arrangements because he didn't feel that Bethany would survive the night. I was devastated! I hadn't even seen her yet! My husband stayed at her bedside most of the night and kept me posted on her condition. The next morning her condition had improved somewhat, and she was still with us. They allowed my husband to wheel me in to see her. I thought I was prepared for what I was about to see because I had toured the NICU twice before she was born. But it turned out that it was very different because it was my own child hooked up to all those machines. I think what bothered me the most was the high frequency ventilator making her chest vibrate so violently. I was only allowed to stay for a short time, and when I got back to my room, I bawled and prayed!

Bethany had her ups and downs through that second day and through the night. But by 10:00 P.M. the following night, they decided that she was stable enough for her life-saving surgery. Before her surgery, we had her baptized and then off she went. After her surgery, the doctor came in and told us that she probably wouldn't be awake until the following morning and that they had given her some paralyzing medicine so she wouldn't be moving at all until at least then. Ten minutes after we talked to him, we went in to see her. (They had closed the NICU and did the surgery right there in her bed). When I talked to her, she opened her eyes and stared at me! And when I held her little hand, she squeezed my finger! She was such a little fighter!

The remainder of her hospital stay was touch and go. The first time they tried to extubate her, we were there. They waited for what seemed like an eternity for her to start breathing on her own, but it wasn't flying, so they bagged her and reintubated her. It broke my heart. About a week after that, I was at home resting with my son, (they made me go home to sleep), when I got a call from the neonatologist. He called to tell me that Bethany was off the vent and doing well! She was on a nasal cannul but pretty much holding her own! What an achievement! I was so excited! I went to the hospital, and for the very first time, was able to hear my baby cry. What a sweet, sweet sound!

A few days after that, she swelled up like a big balloon, and her blood pressure went sky high. So her BP meds were upped, and she was put on diuretics to get rid of the fluid that she was retaining and causing her to swell. They got that under control, and then they cut her narcotics off cold turkey! That didn't go well at all! She cried and cried from withdrawals. So they ended up putting her back on them to slowly wean her off. To make a really long story short, Bethy was eventually put on feeds through a Gavauge and then was able to nurse. Then one day when I came in to visit her, the doctor came in and asked me how I would like to take my baby home! He said that he wanted me to "room in" with her that night in a special room, and the next day they would release her. Ohhh, what a happy day!

Bethany is now 3 1/2 years old and doing fairly well. She has some bowel problems, reflux, and if she gets too active, she has some breathing problems. But those are so small compared to what she went through just to be here today! Her development has not suffered at all. She is in pre-school and absolutely loves it! She’s writing her name and starting to spell words, and she is the sweetest child, always thinking of other people before herself. My little angel! Anyway, that is Bethy's story in a nutshell.


Written by Bethany's mom, Jennifer Jenkins (Washington)

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 5 - Dear Nicholas Sparks (Guest Blogger Kimberly Switzer)

Dear Mr. Sparks,

It began at the end of January when I found out I was pregnant after a miscarriage a year earlier. I was ecstatic and terrified at the same time. I had the usual morning sickness and as the weeks flew by I became more confident that baby was sticking. We passed the 12 week mark and finally I was able to feel relieved, I was so sure that nothing could hurt my baby now. When I was 13 weeks pregnant we went for our first ultrasound and saw baby's heart beating so fast, it was surreal. The pregnancy continued to progress normally. My doctor was a little worried since I was hardly showing, but it was the same when I was pregnant with my now 3-year-old daughter.

Our next ultrasound was at 18 weeks and 6 days and it is a day I will always remember. I saw our baby kicking up a storm and thought it was strange that it was moving so much and yet I didn't feel all the movements. Pretty soon the tech starting saying "Look at his legs moving so much....he sure is an acrobat" So when we asked her if that meant baby was a boy, she said she would have to talk to the radiologist before she could tell us. She continued to take her pictures and she got really quiet, but I just assumed she was concentrating on getting good shots. After she left the room Evan, my fiancé, said that she had put a question mark on one of the pictures, the picture of his stomach. That worried me for a few minutes until she came back in and said that yes our baby was a boy! Evan and I were so excited, our family would be complete! As soon as we were out of the office we were on our cell phones calling our families to tell them the good news.

The next day, May 29th, I went in for my monthly appointment. It was the day my life changed forever. My doctor said that she reviewed my ultrasound results and that my son had a hernia in his diaphragm. She drew me a diagram to show me what she meant, but she was very vague. After that she found the heartbeat of my son, it was amazing! She had tried to find it earlier at 14 weeks, but the Doppler she used was so ancient and didn’t pick it up. I hopped off the table and she told me she was referring me to a specialist at the hospital. I was to wait for him to contact me for an appointment. A week went by and I hadn't heard anything, so I called my regular ob/gyn's office to get his number. I called his office and they finally made an appointment for me the next week. The week went by so slow, I felt like I was dying. My fiancé and I did as much research as we could on CDH and found it all pretty grim so when we arrived at our appointment at the hospital we were pretty messed up. Dr. Olatunbosun is the chief doctor for obstetrics at Royal University Hospital so we put our complete confidence in him, and all that he told us was that the severity can vary between cases and that we really couldn't know how bad it is until baby would be born. He sent us for a diagnostic ultrasound the next week(3 weeks after I first found out about Asher's condition.)

The tech was very nice and explained that the ultrasound would take a little longer than normal, about 30-45 minutes. So I lay on the table letting them to their work, all the while keeping my eye on the clock. A half hour passed and she was still taking her pictures, soon an hour passed and she was still going at it. She was almost done when her colleague came in to look at the ultrasound as well. They were talking about heart hypertension and turned on the Doppler so we could hear Asher’s heartbeat. I was almost in tears, I love that sound! Then they checked where the blood was flowing and they found that the left side was not functioning properly, leaving the right side to do all of the work thus leaving it severely strained. Finally 1 hour and 40 minutes after she began it was over. As I wiped the gel of my belly she said that Dr.O would be looking at the results and I should wait in the waiting room for him. He came in 15 minutes later to tell my sister and I what we really did not want to hear. Asher's condition was placed in the poor prognosis category. He explained that they measure the size of the lung to the size of the head to determine how severe the damage is, then place them in a category; excellent, good, and poor. He then went on to explain that the excellent category usually consists of deformities that are not life changing(missing fingers, limbs) the good category is where they can do surgeries that allow the baby to have an almost perfect life and the poor category, where Asher was placed, is where the baby would have to depend on machines for a while and there is no guarantee on how good a life the baby would have. This is when Dr.O brought up induction, and explained that it would be a good consideration for me. My sister and I left shortly after that and when Evan got home from work I explained everything to him and we made a decision to induce.

The following Monday I called Dr.O's office and told him that we wanted to induce, so he had us come in the next day to talk about the induction. So when Evan and I arrived and he started telling us the opposite of what he had told my sister and I, basically repeating what he had said at our initial appointment. There is no way of knowing that it is as bad as they think etc. I was completely dumbfounded. How can tell me this when 4 days earlier he was talking about induction?? Dr. Olatunbosun then referred us to another specialist and we had an appointment with her the following Friday, June 29th. As we left Dr.O's office Evan and I did not know what to think. The doctor had totally contradicted himself and changed our son’s diagnosis within a matter of 4 days, once again giving us false hope. We decided that we would hear what this other doctor had to say, but we were still pretty sure we wanted to induce if it was bad.

Friday rolls around and we are again waiting in an office. Finally we get in to see Dr. Jocelyne Martel. She immediately made us comfortable, whereas with Dr.O we were a little intimidated. She apologized for making us wait so long to see her, we were supposed to see her all along but she was out of town. She then asked us to tell her what we have been told about Asher’s condition and what we understand. I told her how Dr.O had contradicted himself and that we were very confused and just wanted her to tell us exactly what she knows from the results. She was very sincere as she told us that she had already seen 2 cases of CDH this year(she handles all of the northern Saskatchewan and Manitoba cases) both of which were not nearly as bad as Asher and they had been delivered in Edmonton. She explained that we could opt for surgery but would have to go to Edmonton for the delivery as they have the necessary equipment, but she said that with the severity of Asher's hernia and the extensive damage to his heart and lungs she did not think that even with surgery it would be able to give him a good chance at life, a 10% chance of surviving. Evan and I told her that we wanted to induce as soon as possible as we were nearing 24 weeks. Since it was Canada Day weekend we would have to wait to the following Tuesday, July 3rd to be induced, and she told us to be there at 7am so we could do the amnio first(we asked to have one done.)

That weekend was the hardest of my life, knowing that it would be the last weekend with my son. I tried so hard to remember every little move he made. I took so many pictures of my belly and just spent time rubbing it. Tuesday morning came and I went to the hospital. Dr. Martel was already there getting everything ready and soon we were in the ultrasound room and doing the amnio. Once she was finished she inserted 4 tablets of certavil to soften my cervix. I was then shown to my room at the end of the hall of the antepartum ward. I got my IV around 10 am when I started cramping. Around 2 pm my contractions started getting painful and the nurse offered me some pain medicine that I honestly cant remember the name of. It was heaven and soon I sunk into a drug-induced sleep. I was told to call the nurse anytime I needed more pain meds, but around suppertime the contractions were too intense and since I was only dilated a fingertip they gave me Demerol with a button I could push as often as every 6 minutes. Around 10 pm I fell asleep and woke up with very painful contractions at 2 am. The nurse checked me and said I was going to be moved to the delivery ward. My mom(who had stayed with me) called my sister and Evan to come to the hospital.

It all happened so fast after that. Evan showed up and was talking to me and all of a sudden I felt like I had to poo. I knew this meant it was time to push, so I told the nurse but she told me to wait since the doctor on call would be here soon. I tried singing, crossing my legs...everything, but there was nothing I could do. At 2:46 am July 4th 2007 and at exactly 24 weeks Asher decided it was time to appear and he slowly came without me having to push. I remember apologizing to the nurse for not waiting and to my mom. I told her to shut up when she told me to calm down....I felt so bad and started to cry. The nurse wrapped Asher up in his special blanket Evan and I bought him and brought him to me. He was so peaceful I could hardly believe something was wrong with him. I held him for a long time, and noticed that we were twitching a little, his muscles relaxing the nurse said. The second time he twitched he smiled at me. A big beautiful smile as if to let me know that he’s safe and happy. That is a moment stuck in my head forever, the only time my son smiled at me. After Evan held him for a while we let the nurse take Asher and clean him up. It was close to 3:30 by then and I told Evan to go home, he was exhausted and it wouldn't be comfortable to sleep in the chair in my room, so my mom and Evan left and the nurse came in to bring Asher to me one last time. She had him in a little green bunting bag with a knit hat and wrapped in a little knit blanket. She told me that she had taken his hand and footprints for me so his hands would stain me. I left him wrapped up and just cuddled with him for a couple more hours, we even had a nap. Then the nurse came in to help me into the shower. I sat there and it finally hit me as I looked at my flat stomach, my son was gone!

Then the nurse helped me back into my gown and put me in a wheel chair to take me back to the other room. She gave me a beautiful wooden box and his blanket we had bought him. As she was wheeling me down the hall, I passed a room where someone had just given birth and I heard the baby cry. When we got back to my room the nurses got me settled in and the delivery nurse showed me the box, it had his outfit she had put him in along with his memorandum card with his prints on the back, and his id bracelet. It was 5 am by then and I passed out for a couple hours and woke up hysterical at 7 am. I called the nurse and she came to talk to me for a while until I calmed down, I called my mom to come and get me and I was discharged and at home by 11 am. We had an autopsy done on Asher and the preliminary results have shown that both of his lungs were hypoplastic and compressed as well as his hypoplastic right jaw. We are still waiting for the final report, but his amnio results show that he had a normal set of chromosomes. The 10% chance of surviving that was initially given to Asher was incorrect since both of his lungs were compressed our son never really had a chance to live, even if we would have chose the surgeries.


Written by Asher’s mom, Kimberly Switzer (Canada)

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)