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