Thursday, December 31, 2015

December 31 - Dear Nicholas Sparks

Dear Mr. Sparks,

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

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

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

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

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


Dawn M. Torrence (Williamson) Ireland
CHERUBS President & Founder
Shane's mom

Wednesday, December 30, 2015

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)

Tuesday, December 29, 2015

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)

Monday, December 28, 2015

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

Dear Mr. Sparks,

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

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

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

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

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

Sunday, December 27, 2015

December 27 - Dear Nicholas Sparks (Guest Blogger Paula Yerger)

Dear Mr. Sparks,

This is the story of our daughter Katie Elizabeth. She was diagnosed with a CDH moments after her birth, and then eventually with Fryn’s Syndrome. We had no idea she was so sick. We'd had the AFP and the ultrasound. Her heartbeat had always been good and strong. She was an active baby.

Katie was conceived in March 2000. We were extremely happy to learn we were expecting. Our oldest daughter, age 6 at the time, was excited to learn she would be having a brother or a sister. I had awful morning sickness. It wasn't just in the morning, it was morning, noon and night! I was sick for about 2 1/2 months. I hated the seasick feeling, but I loved knowing that it was a good sign of a healthy pregnancy.

At around my 3rd month, I started feeling uneasy. I was convinced that *something* was wrong. I expressed my concerns. My doctor assured me that everything was fine. I still couldn't shake my feelings. About my 4th month of pregnancy, I started feeling uncomfortable. I seemed to hurt more than I remembered with my first pregnancy. My family and I had gone on a quick family vacation to our favorite amusement part and I knew the walking was going to be tiresome, but several times during the day I would start hurting terribly, almost to the point it hurt to walk. I later realized that I could no longer feel when I had to use the bathroom. Emptying my bladder every hour or so would became my routine until I delivered Katie.

Shortly after we returned from our mini family vacation, I went in for an ultrasound. My husband was so excited to see her on the screen. It was confirmed that she was a girl! My husband was in awe when he saw her little heart, beating so strongly. The tech said everything looked good.

Looking back, I would have to say that there would have been 2 maybe three red flags: I insisted that I saw her *hand* clenched; she was laying on her other hand/arm; and the fact that even though she was an active baby, she seemed non-responsive to our pokes and prods to my belly, it would almost seem as if she was trying to run away from them. My OB confirmed that my ultrasound looked fine. There was no indication that she even had a CDH. He did mention that I had a mild case of placenta previa. Nothing was ever mentioned about this since.

Shortly after my ultrasound, around my 6th month, my husband and myself started to notice that I was getting big. I was big with my first daughter, but this time, I felt & looked bigger than normal. Even my OB commented how big I had become since my last visit. He didn't seem concerned about it. By the last 3 or 4 weeks of my pregnancy, I had to stop driving because I couldn't fit behind the wheel, nor could I sit comfortably to drive safely. It also hurt to walk. I couldn't get comfortable to sleep; I felt like I was a balloon and I was about to pop at any moment. I had strangers asking me if we were sure there was only one baby in there.

During the last week of my pregnancy, I saw records that indicated that I was measuring over 2 weeks larger than what I was. We took Katie 11 days early, making me 38 weeks pregnant, I remember reading a document that I was measuring at 41 weeks.

November 28 came very quickly. We arrived at the hospital for the scheduled c-section. I was prepped and wheeled down to the OR. I chose to be completely sedated for the procedure.

When I started to wake up in the recovery room, I just had that feeling that something wasn't right. Sure enough, when I started asking for my baby, the recovery room nurse told me that my baby was having problems breathing. My heart broke into about a million pieces. I remember thinking no, not again! My first daughter had some mild complications after her birth and I just couldn't handle going through this again. Unfortunately, that was nothing compared to what I was about to encounter.

I was back in my hospital room when the meds started to wear off. I remember asking for my baby and that I needed to see my baby. Immediately, people started telling me that they were working on her and that we'd know something soon.

I have to stop and mention that shortly after I had Katie, a nurse for some reason felt it was necessary to mention to me that I had an enormous amount of amniotic fluid. Had I known then what I know now, I would have insisted my doctor do a more extensive ultrasound.

Katie's doctor came in and started to tell us that she had a CDH. He was confident that it was a minor tear in her diaphragm, and that he was almost confident that her lungs were fully developed and that this was something that happened when she took her first breath. He life flighted her to Children's Mercy hospital in Kansas City, MO. There, we learned that she had, in addition to her CDH, several other anomalies, hence leading to the tentative diagnosis of Fryns Syndrome...we're still waiting confirmation through the autopsy report. We also learned that her lungs were not completely developed; in fact, one was almost nonexistent and the other was significantly under developed. Once we learned the severity of her medical condition, we decided to disconnect her life support November 29, 2000. Katie died in my arms.

She looked absolutely perfect. She was beautiful. It's so hard to understand why this happened to her. I never heard her cry, I never saw her open her eyes to look at me. Fryn’s Syndrome cannot be detected in an amnio because they have not found the DNA link yet; and as we're all too familiar with, detecting a CDH on an ultrasound is difficult. There are other anomalies that could be detected on an ultrasound if the tech is trained well and knows what to look for, but unfortunately the outcome doesn't change. Fryns Syndrome is a rare genetic disorder. Majority of the babies born with Fryn’s are stillborn, and the few that are born alive are on life support and will be mentally challenged.

My husband, my daughter and I sat and held Katie for a long time. Shortly afterward, my daughter dressed Katie and helped present her to our families. And, then shortly after that, they brought her back to me and I continued to hold her for several more hours. I stroked her little head, smelled her hair, patted her back and just rocked her. I told her how much I loved her and how much I wanted her. I sang to her, I looked at every inch of her body. I had to cram a lifetime into a few hours. I just held her. I sat there and cried for her, my tears spilled over her little head. I wanted to take her home with me so badly. I was her mamma, why couldn't I make everything all better. I just didn't understand. My husband and I held her and held each other, together we cried. It just wasn't supposed to happen that way.

We had Katie cremated and we brought her home. Katie's signature color is purple. It also happens to be my favorite color. When I see the color purple, I feel comforted in knowing that even though I only knew my daughter for such a short time, we had something in common.

Written by Katie’s mom, Paula Yerger (Oklahoma)

Saturday, December 26, 2015

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)

Friday, December 25, 2015

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

Thursday, December 24, 2015

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

Dear Mr. Sparks,

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

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

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

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

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

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

Wednesday, December 23, 2015

December 23 - Dear Nicholas Sparks (Guest Bloggers Linda and Daniel West)

Dear Mr. Sparks,

This is the story of our beautiful little girl, Emma. She blessed our lives. My name is Linda, and I am Emma’s mum. Her daddy’s name is Dan. In June 2000, we found out that we were expecting our first child. We were a bit shocked at first because we had only been trying for three months and had expected it to take a little longer, but we were very pleased. After getting a positive home pregnancy test result, we went off to see my GP to have it confirmed. We were told our little baby was due on 11 March 2001.

Things went pretty well, and at 12 weeks I decided to take the option of having a neuchal translucency scan. I was so excited that I would get to see our baby for the first time. It was still hard to believe that I was pregnant; I had been getting a little bit of morning sickness, but never actually had to throw up so was managing that OK. My GP told me that this scan would check for things such as Down syndrome. Off I went for the scan; it was amazing seeing the little baby on the screen, my heart just swelled with love. It was real! But I went from one almighty high to a horrible low with a thump. The radiologist advised that the thickness of the skin at the base of our baby’s neck indicated an increased risk of Down syndrome; my risk went from 1/380 (round about) to 1/188. We were both scared and worried. We were told we should have some invasive tests done to see if the baby did have Down syndrome. We were told that there were two types of tests we could have done, amniocentesis, or chorionic villus sampling with amnio.

My GP recommended we go to talk to an obstetrician for help in making our decision and recommended Dr. Hill to us. We went and saw Dr. Hill, and in our circumstances, he recommended amniocentesis and recommended a doctor to us. We made an appointment for the amnio and then started on the waiting game. It was (or I thought so at the time) the worst 4 weeks of waiting we had ever experienced. At 16 weeks we went and had the amnio done and everything went fine. But a hint of what was to follow was contained in the doctor’s report; it mentioned that it “appeared the stomach was partly in the chest.” We saw this and wondered what it meant, but as no one had mentioned anything to us, it must not have been serious. Weren’t we wrong!

Two days later we got the preliminary results back, and it was good news. So far, it indicated everything was normal, and the baby did not have Down syndrome, but we had to wait another week or so for the final results. We happily went off on our holiday to New Zealand to visit my family feeling fantastic. While we were in New Zealand, we got the final results, which confirmed that our baby did not have Down syndrome; everything with the baby’s chromosomes was normal. It was like a load off our shoulders, and we were looking forward to the rest of the pregnancy.

We were booked in to have a 20-week scan when we got back from our holiday. Our world collapsed when we were informed then that the baby had a diaphragmatic hernia. I have never been so scared. What was this “diaphragmatic hernia”? What did it mean? The obstetrician who did our scan and amnio recommended we go straight to hospital to advise them, which we did. Luckily, a nice nurse was on duty at the antenatal clinic that I attended at the Royal Women’s Hospital. She arranged for a neonatalogist to speak to us about and explain what was wrong. When we were told that we could not underestimate the seriousness of the condition and that our baby could die, we were absolutely stunned. This was not supposed to happen to us; what had we done wrong! The doctor was very good and drew diagrams and explained in as plain a language as he could what would have to happen. As you can imagine, we were full of questions. We were told that the baby would need to be taken from us immediately after it was born, sedated and intubated, and placed in intensive care; when they were happy the baby was stable, they would look at operating. We could expect our baby to be in hospital for 3 to 4 months. We walked out of there in shock.
We were back at hospital the following week to see an obstetrician and find out more. It was the beginning of what seemed like 1,000 visits to hospital. After not liking the first obstetrician we saw, we switched clinics to Dr. Hill’s, the doctor we had seen privately before this diagnosis. We both liked Dr. Hill and were comfortable with him looking after us. We were determined to do everything we could for our little baby. Thankfully, it was around this time I found Cherubs. It answered a lot of questions for me. My way of coping was to find out all I could and be as prepared as I could.

We then began the cycle of monthly appointments, ultrasounds, etc. We had decided not to find out our baby’s sex. I had been diagnosed as having polyhydramnios, common with babies with CDH; otherwise, I was feeling okay, getting bigger, feeling lots of movement. We had a meeting with Dr. Kimble who would be performing the surgery. After being on an emotional roller coaster for a couple of months, he instilled some confidence in us, and we felt better; it was not hopeless. He told us that babies who did well usually did really well, and those who did not do very well, didn’t. It was up to each individual baby.

At 31 weeks, I ended up in hospital. I had been at work and was having lots of what I thought were Braxton Hicks, but realised they were coming a bit thick and fast for that. I rang hospital, and they said, “Come in; we had better have a look at you.” I stayed there for three nights, with two trips to the labour ward, as they thought I was in early labour. I had two steroid shots for the baby’s lungs. Fortunately, my cervix remained long and closed, and they managed to stop the contractions and sent me home. My obstetrician advised I had an irritable uterus due to all the extra fluid, and I would have to take it easy and finish work. We were told the baby would probably come early. We had another couple of trips to hospital, which were false alarms, and our baby’s due date came and went.
The time before Emma’s birth had been tough, but we knew we were in for tougher. I was not very patient before all this, but feel I am a more patient person now. Some things are just beyond our control. We had received lots of support from our families. But I felt some members of the family did not really understand the seriousness of the matter.

I was getting a bit fed up of it all when her due date came and went. I wanted her out! I wanted the next stage to start. I went for my weekly appointment four days before she was due, hoping my doctor would say, “If you have not had it by Monday, come in and we will induce you.” But he checked me out and said it was not safe to be induced yet. I was a bit disappointed but realised there was nothing I could do; the baby would come when it was ready and while I was carrying the baby, I knew he or she was safe. The following week when no baby had arrived, he decided that if I had not gone into labour by Sunday, to come in and he would book me in to be induced. It was a bit scary. We had a date and things were going to start happening!

My mum came over from New Zealand about six weeks before our baby was due (as she was supposed to come early!), and then two weeks before she was due, my sister and father arrived. I am so glad they did; they were there when Emma was born and shared her entire life with us. Danny’s parents came down for her birth as well.

On Sunday evening, I was admitted to hospital and had the gel placed on my cervix. Danny was with me and stayed for a while but we were told that nothing would happen until the next day so he went home. That was about 10:00 p.m. I tried to get some sleep (fat chance!) and about midnight asked for a sleeping tablet. This did the trick, and I got about 4 hours sleep, waking at 2:30 p.m. I started to get small contractions and had a lot of what felt like bad period pain. It was 3:30 p.m. when I was lying on my side that I moved and felt a “pop.” I remembered my mum saying that when she was having my brother she felt a pop before her waters burst. I rolled over and sure enough my waters came gushing out. It was the weirdest feeling. I called the nurse, and she changed my bed, etc. There was no turning back now! About half an hour later, the contractions started to increase in strength and frequency. I rang Danny at 5:00 a.m. asking him to come in. I needed and wanted him with me. At around 6:00 a.m., Danny arrived at hospital with my mum, dad, and sister in tow, all looking a bit bleary-eyed. It was the start of a long day.

About 7:00 a.m. they took me down to the labour ward. I had decided I would have the baby by lunchtime (again WRONG!). I needed pain relief not long after that, so I tried the gas. It did not do much for me, and around 9:00 a.m. I asked for an epidural. At around 12:40 p.m., I was 3-4 cm. dilated. Things were going pretty slowly. I was hooked up to saline, syntocin, and the fetal monitor and was not allowed off the bed. Baby was doing fine. I managed to get a bit of rest in the afternoon, and Danny got to have a snooze on the comfy chair they had in the labour suite at the same time. At 5:40 p.m., I was fully dilated and bubs was in the right position, so the midwife said I would be able to start pushing in an hour or so. I started to push about 7:00 p.m., but after an hour and a half of pushing and getting nowhere, I was exhausted. It had been a long day, and I felt like I was getting nowhere. They’d had to turn my epidural down as my blood pressure dropped. I was starting to get distressed, but bubs was doing ok. I just knew I could not push her out, and I was disappointed with myself. I felt like a wuss, complaining; my back was killing me, and I could not get comfortable. The midwife called the registrar in and she checked me out; they then discovered that she had turned posterior and appeared to be stuck, so they called my obstetrician.

While we were waiting for him, the midwife said I might have to have a caesarian. I was prepared to do whatever they felt was right, but from the start, my doctor had said he wanted me to give birth vaginally. Dr. Hill arrived, checked me out and immediately took charge. He decided on a vacuum extraction, and they would try to turn her. I was immediately calmer and listened to the instructions they were giving me about what I had to do. Once I knew that I was going to have some help, I felt a lot more confident. Twenty minutes later (at 9:39 p.m.), our beautiful little girl came into the world. She was placed on my chest for a brief minute and then whisked off by the midwife to the resuscitation team waiting outside the door. We never really saw her, just her sore little head from where the vacuum had been, but we heard one cry from outside the door, and we both looked at each other, our hearts filled with love. They were happy with the way she responded to the intubation, and she was taken up to the ICN. They brought down photos of her shortly after; she looked just like her dad.

I did not get out of the labour ward till 1:00 a.m. the next morning, as they were very busy. We all went up straight away to the nursery to see her. They arranged for the chaplain to come in, and we baptised her. I got back to the maternity ward at 2:30 a.m. and was put into bed. Danny, my Mum, Dad and sister Megan then left; we were all exhausted. It had been a long day! I have to say that I would not have made it through without my wonderful husband. He was fantastic. They gave me a tablet so I could sleep, and I woke 4 hours later just relieved that they had not come and woken me during the night, so my little girl must still be alive.

She remained stable for the first day, but was on maximum support. She took a couple of turns for the worse, but managed to work her way back again; she was a real fighter. It was hard seeing her lying there. All we wanted to do was to pick her up and run away with her. We sat with her, talked to her, told her how much we loved her and all the things we were going to do with her when she came home; we also read stories to her.

The surgeon came round to see her, but he was not happy with her condition. She was not making any headway. The doctors advised us that she was on maximum support, and she had to improve before surgery could be considered, as she would need more support after the surgery. This was heartbreaking. The Tuesday I was in euphoria--we were parents. It was the most wonderful feeling, but mixed with this horrible fear we would lose her. On the Wednesday, the tears flowed quite often. I could not sleep on the Wednesday night; I woke up in the middle of the night, and my thoughts were filled with Emma. I asked the nurses for some paper and an envelope, and I sat down and wrote her a letter. When I finished the letter, I went to the nursery. I had to see her. They put the letter in her cot. I wanted it to be with her all the time, as we could not be there every minute of the day. I wanted a part of us with her.

On the Thursday morning, I was up and hoping to be discharged. I went up to the nursery and read her a story. Danny arrived just as she took a turn for the worst. Megan, my sister, was there, too. She managed to improve slightly but not up to what she had been. We spent the morning with her and took more photos. At lunchtime, I went back to my room, saw the doctor and was discharged. We had 1,000 things to do. We went to buy a mobile phone so that when we were not at the hospital they could get hold of us at any time. I rang that afternoon and called to see how she was doing. She was still the same, no improvement. I told her nurse that we would be in around 6:30 p.m. – 7:00 p.m., that we were just going to have some dinner.

We got to the hospital about 7:10 p.m. I was walking in when the nurse came towards me. For some reason, I had hurried ahead of the others; they were washing up as was required. I just had to see her, so I went on ahead of them. One look at her face, and I knew that my little girl had gone. They had tried to call us, but we were on our way in. It had happened so quickly; she died just before we got there. I turned and looked at my husband who was about 20 metres behind me, and he knew as well. That moment was the worst we had ever experienced and will be the worst we ever experience. We ran to her. She looked so beautiful, so peaceful.

They took the respirator out, and we were able to hold her for the first time. The staff at the nursery was fantastic. We held her by her cot for a while, and then they took all the other leads out, and I carried her to a special room they had. We held her, kissed her, cuddled her. My parents and my sister did as well. Danny and I gave her a bath and then dressed her in a little outfit I had bought for her. We then held her, kissed her, cuddled her again. During this time we took lots of photos. This time we spent with her was so special; we will never forget it. She was our most beautiful and special daughter.

The hardest thing was leaving her. We went and saw her again the next day and held her again. I had to because I was having trouble believing what had happened. I had to see her again. We laid her to rest after a beautiful service the following week.

Emma will always be with us in our hearts, until we see her again.

Written by Emma's Parents, Linda and Daniel West (Queensland)

Tuesday, December 22, 2015

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)

Monday, December 21, 2015

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)

Sunday, December 20, 2015

December 20 - Dear Nicholas Sparks

Dear Mr. Sparks,

Have you seen all the photos in the news about grieving parents incorporating their children's memories into photos? I've become obsessed with them. I think they are beautiful.

I recently moved and I've been looking at photos of Shane that i haven't looked at in years. It's been emotionally draining. Tonight I just felt pulled to do this photo. I have 10000 other things to do before Christmas but I couldn't shake this so I gave in and did it.

I don't have a little family (no husband or other kids - going through a divorce) so what I do have for a family and where my son's memory is remembered the most is at CHERUBS. This is our office hallway. The tree is decorated with my personal ornaments, including Shane's. This is where his spirit lives on for me. This photo is a way to include him in my current life and raise awareness. It is symbolic. It's not the best graphic quality... I have never done this before.

I have a very dear friend helping with a project similar to this (his will be much better than mine! He's an amazing photographer) and I've spent months talking to him about a way to do this for all our grieving parents. We are working on ideas. 

Christmas is a wonderful time of year for me, even though I lost my son.  I still believe in Santa and my faith is strong and I know I will see my son again because of His son. 

If you're not familiar with  Shane's story, you can go to Shane's site at

I'm behind on posting letters but they are coming.  We will finish this year.  Between the divorce, moving more, a death in the family and all the charity work... I don't have time to myself lately to do anything, including write letters.  I write them out in my head, I have notes everywhere... they will make it here before the end of the year.   I am not a quitter.
From my family and from the charity to your family... Merry Christmas.
Dawn M. Torrence
Emotionally drained grieving CDH mom

Saturday, December 19, 2015

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)

Friday, December 18, 2015

December 18 - Dear Nicholas Sparks (Guest Blogger Candace Kincade)

Dear Mr. Sparks,

Our son Sam was born May 1st, 1997 with a left CDH, soft cleft palate, hypospadia, and a left femur fracture. My pregnancy had been textbook normal and after our "normal" amniocentesis and ultrasounds we felt excited and quite confident about the upcoming birth of our healthy baby boy. We decided to get out of town one last weekend before Sam was born and went to Pismo Beach for the weekend on April 26th. While we were out to dinner I sneezed and my bag of water ruptured. ON the advice of my great OB/GYN MD we made what seemed like a very long drive home to L.A. where he admitted me for premature rupture of my membranes and premature labor. At the time, I was 34 weeks pregnant.

This crisis was nothing however, compared to our shock several days later when Sam was born with his problems. He was immediately intubated and transferred to Huntington Memorial Hospital in Pasadena to their NICU for possible ECMO and nitric oxide treatment. Luckily Sam didn't have to have either of these, and since he was stable they repaired his left CDH at 5 days after he was born. He did very well with the surgery but remained intubated for 4 weeks because of his traction for his femur, continuing chest tube draining, and his very small left lung. A geneticist came to see us in NICU and ruled out any syndromes which we were grateful for, but she didn't have any answers as to why Sam was born with all these problems.

Without a doubt this was the most difficult thing my husband and I had ever been through in both of our lives. Sam is my first and only child--my husband had three children by a previous marriage, so we decided to only have one child together. Sam stayed in the NICU for 10 weeks and it was so hard to make it through that time. Even with me being a nurse, there were many days I felt either total fear over how Sam would ever survive all this and be normal, or despair over all he and we had been through. Several of the NICU staff were wonderful--giving us the information we so much needed to understand Sam's diagnoses and TLC when we had enough of all the tests, alarms, and noises of the NICU. I read a book when I had really had my fill of all the technical and medical side of things--Kitchen Table Wisdom by Dr. Rachel Remen. This book gave me some hope and helped me keep in touch with the more human side of medicine and life. More than anything though, we wouldn't have made it through this without the help and support of all our family and friends.

Sam came home on Wednesday, July 10th and since then has overall done pretty well. He has gastric reflux and because of this, the cleft palate and his small left lung feeding has been a challenge. They had to repair his CDH again in Oct. as the original patch ruptured and his colon had migrated up into his chest again. Luckily though, this time he was only in the hospital 4 days and did well with the surgery. At the same time as this surgery, they put in a G tube which we hated the idea of, but his feeding was going slow and he was starting to pull out his NG tubes frequently. We are very fortunate to have a wonderful, supportive feeding therapist who truly has been a godsend to us during all of this.

We were lucky that Sam never had to be on oxygen since was extubated and so far, knock on wood, he has not had any major colds or infections. He is gaining weight steadily and at six months weighs 16lbs 10oz-- a long way from his birth weight of 4lbs 12oz. The pulmonologist was reassuring in feeling that Sam's left lung would grow given time and no major respiratory infections.

All along we have been very concerned how Sam would fair with so many health problems. Perhaps one of our best days was recently when we had Sam evaluated by a developmental specialist who encouraged us that Sam would be fine after receiving more feeding therapy and some developmental therapy. At six months, he is developmentally delayed to about 4 and a half months. Much to our amazement, despite all he has been through, Sam is a very happy baby-- smiles a lot, laughs, razzes and gurbles and seems to just roll with the punches.

We are hopeful for the future and glad to finally be leaving so many fears and medical concerns behind and just enjoy Sam. I am sure that every parent who has had a child born with problems has gone through many of these same emotions my husband, our family, friends, and I have. I don't believe God caused this to happen. No one deserves a situation like this-- not Sam, not my husband, or myself. What I do know is that now, more than ever before my heart goes out to those parents who have had to deal with things like this. This experience certainly has brought home to me that there are no guarantees in life and that being compassionate and caring help fill in the void where the medical facts and cold realities leave off. I wish I had a magic wand to wipe away not only CDHs, but all birth defects and disabilities. Obviously I don't, so I wish everyone to have as much support and love as we have had to find their own way through the hard times and not lose their own hearts and compassion in the process.

Witten by Sam's mom, Candace Kincade (Califonria)

Thursday, December 17, 2015

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

Dear Mr. Sparks,

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

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

Wednesday, December 16, 2015

December 16 - Dear Nicholas Sparks (Guest Blogger Carrie Kime)

Dear Mr. Sparks,

Our journey with Congenital Diaphragmatic Hernia began at our 20 week ultrasound. The ultrasound tech was steadily talking to us and describing our baby’s body parts. It was a boy! Then she became silent as she moved the wand over my belly and kept checking the chest area of our little boy. Our joy over news of having a little boy was very brief. Quickly, we became panicked by watching her face. She concluded the ultrasound and said that she needed to speak with the doctor and to wait just a moment before leaving the room because she wanted to get his opinion on something. After she left the room, my husband and I looked at one another puzzled. I am not an ultrasound tech, but I am somewhat familiar with the inside anatomy of a person and couldn’t help but notice how she took extra notice of the area around his heart. After the doctor returned and took a look he confirmed her suspicions of an abnormality in the chest. We were then referred to a high risk doctor and had another ultrasound scheduled within the week.

After meeting with the high risk doctor and receiving our second ultrasound, we were told that our baby boy had one of two things going on. He either had a cyst growing on his lungs or a rare condition called Congenital Diaphragmatic Hernia. If it were just a cyst, then we would be better delivering in Birmingham, AL, but if it were CDH then Gainesville, FL would be the way to go. Either way, our child would require surgery. Due to his size at 20 weeks they could not tell for sure, but as he grew we would be able to confirm which diagnosis and go from there. We were then asked if we wanted an amniocentesis to check for other abnormalities. I opted to have the amnio and the results came back fine.

My son was our first child. I am sad to admit that I never got excited about my new baby’s arrival. I cried a lot during my pregnancy. I didn’t decorate a nursery for him. I didn’t even want to buy him a crib for fear that I would have to come home to a baby crib, yet no baby with me to put to sleep. As with most CDH pregnancies, I had polyhydramnios (extra amniotic fluid) and had to have an amniotic fluid reduction done just to be comfortable enough to breath during my 8th month of pregnancy.

Two weeks before my due date, my husband and I relocated to Gainesville, FL. My son was delivered via C-section on the evening of January 31, 2006. We heard 2 small cries before he was whisked away with a team of doctors and nurses to be intubated. It all happened so fast. I was then wheeled into a recovery room as my husband went out to talk to family members. Alone in recovery, I tried to recall my son’s face. “Would I know him if I saw him in the NICU with all the other babies?” I thought to myself. About 30 minutes after delivery, my husband came in to check on me. He had decided on a name for him as well, Christian Peter, which means strong rock. He then handed me a picture of our son that was taken by a very nice volunteer with the March of Dimes. I clung on to this picture for the next 24 hours as I lay in my bed, unable to visit my sick baby boy.

The next few weeks were a busy blur. I do remember finally getting permission to walk to the NICU III to see my baby boy after 24 hours away from him. Nothing prepares you for seeing your newborn with tubes and wires everywhere. I wanted so badly to hold him. All I could do was place my hand on his head or hand, but had to be careful not to stimulate him. We had to talk in a whisper and camera use was limited due to the stimulation from the flash.

We were told Christian had a mild left congenital diaphragmatic hernia with only intestines and spleen located in the chest. He had some respiratory failure, which they tried to help with a high frequency oscillator and nitric oxide, but that wasn’t enough. At just 2 days old, due to worsening respiratory failure, he was placed on venoarterial ECMO. He stayed on ECMO for 10 days. He also had PPHN, which stands for persistent pulmonary hypertension in a newborn.

Let me just say that witnessing a baby on ECMO is not a pleasant thing. His whole body was really puffy and lumpy. Whenever he did open his eyes, they just rolled around in his head as if he was really dizzy. We were afraid he might have brain damage since he didn’t seem to be able to focus his eyes on anything, but in hindsight I know that was only because of all the medications they were using to keep him sedated so as not to pull at his ECMO tubes (which he did try to do a few times!).
His surgery took place when he was 16 days old. Dr. Kays and his team did his repair with a Gortex patch. When they wheeled Christian to the NICU III, we noticed he looked sort of gray. After a few hours of close observation by the doctor, he noticed our son’s abdomen began to swell. They confirmed there was internal bleeding and they rushed him back to surgery to find and control the bleed. Our whole family was a wreck waiting for word from the doctor. We paced by the elevator doors waiting on his return. Thankfully, Dr. Kays found the bleed and was able to stop it.

In the days following surgery, our son had to have chest tubes placed on both sides of the chest due to pleural effusions. He had a barrage of tests and scans during his stay. He was weaned off the ventilator at 26 days old and then placed briefly on CPAP for about a week. After CPAP, he was placed on a nasal cannula. Up until this time, I had not gotten to see my baby’s face free of tubes and tape. It also wasn’t until he was on the nasal cannula, that I was able to hold him for the first time. He was 6 weeks old when I first held him. It brought me such joy!

Time seemed to slow down once we moved from the NICU III to NICU II. Our biggest goals were to get him to tolerate his feeds, gain weight, and keep his oxygen saturation levels up. In the NICU II, I was able to be more hands on. I could feed him, change him, and dress him (unlike in the level 3 NICU). Finally, after a very long 57 day stay in the hospital, we were discharged with supplemental oxygen and medications for fluid retention and reflux.

Things went rather well once we got home though I was constantly checking to make sure he was still breathing and wasn’t strangling himself with the nasal cannula. He only used the supplemental oxygen for the first month when we got home. We did have issues with finding an understanding pediatrician that would listen to the request of our pediatric surgeon, Dr. Kays, to keep our son on supplemental oxygen to help his lungs.

I was hyper-vigilant about keeping germs away from him. I refused to take him out in public until he was almost 6 months old. I remember having to fight with the doctor and insurance about getting him an RSV immunization shot when winter rolled around. Nobody seemed to understand how sick he was and could get with just a cold. Due to his medical issues, I was afraid to put him in daycare for feel of him getting sick and having to go back in the hospital. I ended up quitting my job to stay home and take care of him.

We continued traveling to meet with our pediatric surgeon yearly for the first 5 years of Christian’s life. That was how we were able to spot the reherniation when he was only 3 years old. We went back to have Dr. Kays and his team repair the reherniation. It turned out that the gortex patch that they had used, had come away from the back wall of his chest and it was an easy fix. Dr. Kays noted that the muscle tissue of the existing diaphragm had fussed together with the patch rather well on the other 3 sides of the repair.

We are finally down to visits every 2 years, with an upcoming visit in the spring of 2013. Christian has not had any big issues other than the reherniation. He doesn’t have to take any medications anymore. His only issues are getting winded easily, he can’t eat large amounts of food at a time (he grazes when it comes to eating in order to prevent puking), he has to immediately use the restroom after eating, weight gain, and seasonal allergies. We will always be worried about possible reherniation as he grows. We also worry about long term side effects that he may have from ECMO, but it all is an unknown path.

Christian will be in 1st grade this year and is doing well. He is in the accelerated reading program at school and just started taking tumbling classes this year. Our hope is to let him live a normal life. We always encourage him to follow his passions.

Written by Christian's mother, Carrie Kime