July 7 - Dear Nicholas Sparks (Guest Blogger Kirrily Hanlon)

 Dear Mr. Sparks,

Where to begin with Blake's story? It is such a long story but I guess it starts with my 18 week ultrasound. As you normally do, I went in totally oblivious to the fact that anything at all could be wrong with my baby. After the normal bouts of morning sickness, tiredness and a two day stint in hospital for a burst cyst on one ovary, I went in to that room beaming and looking forward to seeing my baby on the screen. We all know that the normal screening takes around 20 minutes but I was there for what seemed like an hour. Finally the sonographer said she was having trouble seeing the heart and it was probably just the way the baby was laying but she wanted to get the Doctor in to have a look. I said sure and was still totally oblivious to the fact that anything could be wrong and didn't think anything more of it. I was just happy to be looking at my baby on the monitor. After awhile the Doctor came in and started scanning. He switched off the machine, told me to "wipe myself off" and he was going to tell me what they had found. A tumour in my baby's chest! CCAM, this too comes with the same amount of problems as CDH only we weren't told anything about CCAM except that we had to wait six weeks, then go back and have another ultrasound to see if this "tumour" had grown at the same rate as the baby or faster. Hopefully, it wouldn't grow at all.

Six weeks went by, I was 25 weeks pregnant. The same doctor did the scan and again said that my baby had a tumour in his chest, it had grown but not at the same rate as the baby so that was something positive. The doctor did mention CDH but said that there was no indication that this was what was wrong with my child. I had to wait another 4 weeks, go back and have another scan.

Anyway 4 weeks later and here I was at 29 weeks, walking in to the ultrasound clinic still not sure what on earth was going on. I certainly was not enjoying my pregnancy because I knew something was wrong but didn't know if it was life threatening or not. Nothing had really been explained to me. It was at this scan that the proper condition was diagnosed. Of course when the doctor mentioned bowel in the chest, I just lost it and started crying saying this was worse. Unfortunately the Doctor's bedside manner left a lot to be desired and he couldn't wait to get me out of the room, so I went away not really knowing much about this condition called CDH.

I was later referred to the Royal Women's Hospital at Randwick because this is the only hospital that is close to home that dealt with high risk pregnancies. I have to say that the staff that I was involved with really did care and they took the time to explain everything to me. I spent a day there meeting with specialists, having an ultrasound and an MRI, meeting the social worker and the high risk obstetrician. He was very forthcoming and didn't hold anything back. His words - "Prepare for the worst, but hope for the best." He also mentioned that it was one of the worst cases he had seen for some time. Needless to say I walked away that day not feeling very positive at all.

The next few weeks were very busy and very draining. With hospital visits every two weeks, work, looking after my 3 year old and keeping up with the normal everyday things that life throws at you I didn't have a great deal of time to "THINK." As the delivery date got closer I started to develop a feeling that something really bad was going to happen. When I tried to explain this feeling to people, they would just look at me. There was only one person I told who seemed to take me seriously, and as she said a mothers instinct is very strong.

My waters broke on the evening of Saturday 22 June 2002. My daughter had been induced so I didn't know what it was to have my waters break naturally so I honestly didn't know it had happened. The only reason I knew something was up was when at 5.30am I woke up and noticed the bed sheet was stained pink. So I rang the hospital and they said to monitor for contractions and to ring back in 1 hour. During this hour my husband and I talked about and knew that once I went to the hospital I wouldn't be coming home until our son Blake had been born. After the hour, I rang and they asked that I come in. My husband and I calmly got organised, dropped my daughter off at Scott's sisters house and away we went. As my husband said "Here we go, are you ready." No I wasn't but I had no choice. I was admitted that day because I lived a fair distance from the hospital and because of Blake's condition. I was only 2cms dilated but they wanted me to go into natural and established labour. If my baby didn't arrive by Tuesday morning they were going to induce me. So Sunday turned into Monday and still nothing. I was lucky to be sharing a room with a really nice lady who was in for Pre-Eclampsia so we managed to keep each other occupied.

It was now midnight on Monday night. We were waiting for the nurse to come in and do her final rounds. Obviously she was running really late and finally came in. She didn't have too much time for either of us, so she hooked me up to a Foetal Monitor and took Jo's stats. Jo's heart rate was 44 so the nurse went and called the night registrar. Meanwhile I was having small contractions and was watching my son's heart rate on the screen. The registrar came in to find out what was happening with Jo and I was watching in horror as my son's heart rate nosedived down to 60. I panicked and screamed for the registrar, the nurse came running and they were both trying to figure out if it was my heart rate or my baby's. The registrar then got the senior Doctor and before I knew it I was calling my husband to get him into the hospital because I was going to the delivery suite to monitor the heart rate. That must have been when the doctor went out to ring the HR Obstetrician because she came back in and said they weren't happy with what was happening and that he had to be delivered immediately. Forms were signed, tears started flowing and my husband finally arrived only to see me on a gurny being wheeled down to the operating theatre.

After what seemed like an eternity Blake finally arrived at 2.07am on Tuesday 25 June 2002. He wasn't doing so well and all I really remember apart from being scared senseless was my beautiful boy surrounded by lots of people in green scrubs being given CPR. Scott & I were just crying and watching and trying really hard to be strong, all I wanted is what every mother wants and that was to hold my newborn. I wanted to tell him how much I loved him, how much we needed him but unfortunately we weren't given that chance. We got the thumbs up from one of the people in scrubs and I saw him being taken away.

Finally I was in recovery and I was just so anxious to see Blake. Touch him. I was eventually taken to the Maternity unit at which time I demanded that they take me to NICU. All they kept saying was that I had just undergone a major operation and they didn't think the bed would fit into the NICU. I didn't care, I just had to see Blake. So they transferred me to a wheelchair and I finally got to see my baby up close. I couldn't stay for long, the doctors had work to do, so I touched him and told him I was there and that I loved him and that I would see him again soon. Unfortunately, I didn't see him again until Tuesday evening. All day I was slipping in and out of consciousness. Too much morphine!

Tuesday evening my brother finally arrived from Melbourne and I proudly walked him down to NICU to show off my beautiful boy. He looked so small with all the tubes. In fact he was only 4 pound 10 ounces so he was tiny. They can give me no medical reason why he was so small. He was born full term. Again, I touched him and told him how much I loved him and that I was so proud of him. I told him he was doing well and to hang in there and I would see him in the morning. I thought I needed my rest if I was to give him the 100% emotional and physical support that he would need. All the visitors left and Scott & I were finally left alone to reflect on the last 24 hours. We both fell asleep and didn't wake until morning.

I think it was around 6am. Physically I felt wonderful. I got up, had a shower and was looking forward to spending the day next to Blake's bed. I could finally be with him. I rang down to the ward and told them I was on my way. They asked that I wait until 7.30am because they were having a change over of staff. So I waited and Scott & I were talking about how he must of done OK during the night because they didn't call us. Our bubble was to burst soon after, because a Doctor walked in not long after that and advised us that Blake had had a really bad night. The machines were up at 100 however he was still deteriorating and if he kept slipping there was nowhere else they could go. Scott ran out of the room, and I hobbled down to NICU. As soon as I walked in Scott said "You had better tell Kirrily" and all I remember is the doctor saying, "There was nothing more they could do". Why? That is the million dollar question I will ask for the rest of my life. Everything from this point is hazy. We called our family to see Blake for the last time and to be there while he was baptised. I couldn't believe this was happening. Everything seemed to slow down, we were waiting for everyone to get there. Didn't they care, because they seemed to be taking their time. It was Wednesday morning so they had to fight peak hour traffic, we just wanted Blake to be at peace. We didn't want him to suffer unnecessarily. Finally everyone was there except my daughter Amy. They forgot Amy! I rang the kindergarten and asked my friend Natalie to bring her in. Natalie has since told me that she has never driven so fast in her life. Amy finally arrived and she got to hold her little brother for the one and only time. Blake was baptised and everyone got to have a cuddle. After that everyone was asked to leave. Because Blake couldn't swallow he had to have his mouth cleaned and suctioned. It was here that I left Scott with Blake and went downstairs to buy my son an outfit. I looked for something but nothing was appropriate. What could be when you know your son is not going to live. I eventually bought a little angel bear, with blue wings and took it back upstairs to give to him. He had opened his eyes. Scott told me Blake had opened his eyes! I missed him opening his eyes! I guess in the scheme of things it is not important but to me it is a major thing that I missed. Scott sat down, and cuddled Blake. They took his tubes out and while Scott & I cried and told our son it was OK to go, he passed away. He didn't suffer and for that I am grateful. Scott asked if I wanted to hold him and of course I said yes. As I was nursing him he moved! What was this! He wasn't gone, he was fighting, I smiled and told Kate our midwife that my son was a fighter and he didn't want to go but she just said that it was the organs shutting down.

After what seemed like an eternity we went to the privacy of our room. This was in the maternity unit and all I could hear were babies crying. It was not fair. All I wanted was to be like the other mothers. Happy and full of the wonderment that is a newborn baby, but this was not to be. We spent that night with Blake. I asked that we be moved to another ward because I couldn't stand the sound of the babies. We watched the football as a family, and we bathed him and dressed him. I think I must have kissed every inch of his perfect body. He still smelt like a newborn baby. I took all of that in. His smell, the way he felt, how soft he was, how beautiful! I didn't sleep, I couldn't. I wanted to spend every second that I could with him. I sang to him, told him stories, took him outside and showed him the stars. It was a cold night! I kept him wrapped up snug and tight, and the whole time all I wanted, all I prayed for, was for some miracle to happen and for him to open his eyes and cry............and before I knew it, it was time to say goodbye. The hardest thing I have ever had to do, will, ever have to do was to hand him over, and as I handed him over to Kate I just kept kissing his forehead and kept saying "I love you, I love you, I love you" and with that I turned and walked out of that room and away from my baby.

I will not say that Blake is with his maker, because this has certainly tested any faith I may have had. All I will say is that Blake is at peace, he is not suffering and I know that wherever he is, he is looking down on me and my family and making sure that we are OK. He IS the shiniest star in the sky.

Sincerely,
Blake's mum, Kirrily Hanlon (Australia)

July 6 - Dear Nicholas Sparks (Guest Blogger Patricia Cheffer)

Dear Mr. Sparks,

I was 42 weeks pregnant and early awaiting the birth of my son. Little did I know that I was about to embark on the longest most emotional roller coaster ride of my life. My pregnancy went extremely well and I never experienced many of the discomforts that most if not all my friends and relatives experience. All my tests came back normal my two sonograms did not reveal any problems. You could almost say that it went too easy. Even my labor was nothing, short, sweet and almost no pain. Then as Matthew began to arrive into this world all hell broke loose. A storm of about 15 doctors, nurses, and God knows who else suddenly rushed the room. I still had no idea anything was wrong with it being my first child. Then suddenly they rushed him out of the room and still not over the birth experience, I was still in the dark. It wasn't until about 15 minutes later that I finally realized that something wasn't right. It was at this point that someone came in to talk to me and somewhat explained that my son was in respiratory distress and was going to be transferred to another hospital better equipped to handle sick babies. I was told that I would be told more when the transport team came. This is when I was told that Matthew had a Congenital Diaphragmatic Hernia but that his was on the left and his chances were 50%. I soon found out that it was much worse than originally thought. Five hours after I gave birth, I released myself so I could be by my son's side.

Upon arriving at Thomas Jefferson Hospital in Philadelphia I was told that Matthews was a right CDH and still again I found out worse later on. As soon as he arrived at TJUH he was placed on ECMO which he would stay on for 2 and a half weeks. While on ECMO at one week old, they had his diaphragm repaired. It was only afterwards that I would find out that Matthew had no diaphragm at all and this was the worst news we were prepared for. The surgeon created a diaphragm for him out of gortex plastic and I was also told that he made it through the procedure like a trooper but it would be a long time if ever, for him to get out of the woods. It took almost three weeks before I could hold him for the first time and then it was for only about five minutes I would have to say that this was probably the hardest thing for me, after the surgery itself. Finally at one month old, his ventilator settings were coming down enough for the doctors to start discussing bringing him off the vent. As the idea was being thrown around my little man decided to take it into his own hands and tongued the stupid thing out. Well they left it out but that didn't last long. Six hours later he had to be put back on and for another month his settings slowly went up again. Finally after well over two months on the vent, he came off. At this point I was still being told nothing about when I might be able to take him home. I lived with no answers about going home for another three weeks then I decided he would do better at home. For another week, I fought with the doctors, telling them I could do everything at home. Finally they told me that if I learned everything I needed to know, they would let me take him home. So in one week, I learned CPR, how to put a feeding tube in, and how to work the pump, I also learned how to detect that everything was in place, and lastly I needed to learn when he needed to be suctioned and how to do it. Needless to say, I was a fast learner and i got to bring him home just before Christmas. The best present I ever got. Since then, he has had surgery for his eye muscles, cleft pallet, and to attach his stomach muscles. Matthew also has surgery in the spring for a sunken chest. Other than these less substantial problems, he is doing great. He is a very smart little guy, knowing and recognizing his ABC's and 1 through 10, but due to the cleft pallet, his speech is a little delayed.

Well Matthew is turning 3 today and let me say he has been the greatest joy of my life. He starts school on Monday and is growing so fast that I almost wonder if this is the same child that had all these problems at birth. As I look back, I also realize how blessed I was that for the most part we had slow but steady progress. My thoughts and prayers are with all of you who have had to experience so many traumas with the diaphragm repairs and those of you who have lost a child to this terrible birth defect.

Sincerely,
Mathew's mom, Patricia Cheffer (Pennsylvania)

July 5 - Dear Nicholas Sparks (Guest Blogger Melissa Halterman)

Dear Mr. Sparks,

hen we found out we were pregnant with our third child we were happy. We tried a couple months before but got so busy with work we just didn't think about it until I got the positive test. We were so young when we had our first two. I wanted to read everything possible so that I would know everything. We had 2 ultrasounds, one at 10 weeks and one at about 22 weeks. My doctor said all looked good. The whole pregnancy was real good, I had no problems. Towards the end of my pregnancy, I was really freaking out about how big I was. My doctor assured me that I just didn't remember what it was like. My legs were sore a lot so they did a vein ultrasound but found nothing wrong. My due date was March 7, 2002. I was so big and uncomfortable and complained to my doctor A LOT! He said he could induce me at 6 a.m. on March 6, 2002. When I woke up that morning, I didn't want to go. I told myself to not be so lazy, just get ready! I did. My cervix was long and it took a lot to break the water. I was real uncomfortable with the whole thing; my other two children came when they were ready. Once they got the pitocin going, I got going. I was in labor for about 3 to 4 hours. Our baby boy (who we were told was a girl) was finally here. I was so exhausted and surprised about the boy part! My sister-in-law and mom and mom-in-law were with me (my husband can't stomach it!) when all of a sudden i realized something was wrong. Why wasn't my baby crying? Why didn't they bring him to me? I asked but got no answer. Before I knew it, there were about 7 people in there besides me and family. They were pumping air into my baby. They finally told me they had to take him for x-rays and they had to call St. Louis Children's Hospital. My husband said he would go. We were deciding on a name since we had a girls' name picked out. My husband said he was going to see what was going on. He came back like 2 seconds later and said they wouldn't let him in and a nurse came out crying. About an hour later, a doctor I recognized from earlier came in with the x-rays. He said our baby didn't make it and he began to tell us what was wrong. I couldn't comprehend what he was saying. Did he just tell me our baby died?!? Why did this happen?!? What happened?!? I really couldn't hear him with all that was going through my mind. Our baby had many problems that we weren't aware of: VSD, ventricular septal defect, CDH and hypoplastic left lung. When you can't prepare for something you feel lost. When this happened, I was so lost that I couldn't deal with it all. For 3 months I still had no clue what happened and why. I had to make myself get out all the paper work and start reading about it. Almost all the stories I've read, people knew what might happen, that something was wrong with their babies. Why couldn't this have been true for us? I know you can never really be prepared for death, but knowing would have helped. I hope no one ever has to go through this without knowing before birth. I hope that very soon someone can figure out why this happens and can make it stop. We are pregnant again and I'm reading a lot more than I ever have about birth and congenital diseases and birth defects. I never thought my child would be born with anything wrong. I have felt so selfish and foolish. There is a lot more to our case that I can't mention now, but basically, this is our story.

Sincerely,
Zarek's mom, Melissa Halterman (Missouri)

July 4 - Dear Nicholas Sparks (Guest Blogger Carolina Chalk)

Dear Mr. Sparks,

Wow, I was pregnant again! It was quite a bit quicker this time but we were not about to complain. Our daughter, Chloe, had taken a while to decide to come along but had been a joy from birth. I was a bit nervous how I would cope with two children under eighteen months, but six months later, a bigger house, new area and a very much larger waistline I remember thinking I would be glad to have two children as long as I wasn't pregnant anymore. Symon and I were planning a home birth to be able to stay close to Chloe, I remained reasonably healthy and our scans had both been fine so it all looked good. I was overdue and my feeling was that I had done my part, he was cooked, time for the eviction notice!

I waddled along to my +40 week appointment determined to ask for a cervical sweep. Instead I walked away with a scan booked for the next day and a rather puzzled feeling. The next day, our scan showed our baby boy was breech and on the large side. We tearfully agreed to a Caesarean Section. The next available slot was Tuesday, 18th of March 2003. The operation went well and the surgeon proudly showed us James who promptly urinated all over him. Later that day, James was weighed at a tremendous 11lb 9oz. Two days later, I had received a clean bill of health and we were told James had a slight heart murmur but that it was not serious. Symon took us both home.

Ten days later, on Sunday, 30th March 2003, we returned to the hospital but this time to the children's ward. James had developed severe sternal depressions with every breath but was apparently well in every other way. Then the tests began. I think we tried just about every piece of diagnostic equipment the hospital had. X-rays, ECG, full heart scan but the worst were the blood tests. James' sats were taken every hour and he was given injections every four hours. The nurses explained that antibiotics sting as they are given but I was beside myself that James was never allowed to just sleep. I remember becoming frustrated with the doctors, perhaps it was the hormones but I just couldn't grasp why we couldn't go home. Finally, on Wednesday morning, James was given an MRI scan. We were then sent straight to ultrasound where I had to breastfeed James to keep him still enough for the sonographer to work. There it was on the screen, even I could see it! James' left kidney was pulsing up through his diaphragm.

Our consultant gave us the full diagnosis back on the ward. James' left lung had presumably collapsed and was not functioning, his left kidney was much larger and higher than it should be and was likely to be plugging a hole in his diaphragm, preventing the other abdominal organs from entering his chest cavity. To make matters worse the kidney was irritating the tissue surrounding his heart. James needed surgery and he needed it as fast as possible before his condition worsened. Other than that, they couldn't believe how healthy he was!

Four hours later, James and I were blue-lighted to Great Ormond Street Hospital. We arrived at 8pm, James' sats were taken again, all medication checked, notes handed over and his general health exclaimed at. I sent Symon home with instructions to sleep, give Chloe a big cuddle from us and to come back on Friday. At midnight James had yet another chest X-ray. I don't remember sleeping much that night, every time James wriggled a respiratory alarm would go off and a nurse would come and check him. Eventually, I persuaded the nurses to let me turn the alarms off each time and check him. Thursday morning brought more tests, a fourth X-ray, more blood tests and a new line, since his original one had closed. Finally, James had another ultrasound; two consultant radiographers and I saw the herniated kidney again. They too queried his seemingly good health but I felt that they finally believed the diagnosis from our local hospital.

As it turned out the radiographers were not convinced but instead decided to add another diagnosis to the pot, James might have a diaphragmatic hernia or he could have a membrane instead of a muscle for his left diaphragm. Either way, a nice Registrar explained, the answer was surgery. They were just waiting for a bed on NICU so could I please sign this consent form? Exhausted, devastated, I remember trying to ask the Registrar intelligent questions while quietly crying. How far from my natural home birth was this? I know I asked, why now? Why couldn't we wait till he was bigger? and, if he was so well, as everyone kept telling me, why did it have to be repaired at all? I think I got answers to everything but what sank in the most was the fact that James was stable at the moment, so surgery was a good idea now but that in truth James was struggling for every breath and the entire team were amazed that he had managed to remain self-ventilating for so long.

Symon arrived that evening and we spent the worst night of our lives. James was booked into the Friday afternoon surgery session, so we waited again. James was not amused at being kept hungry and took to screaming if he saw me. I expressed to keep busy! My sister arrived with a good luck charm from my niece and nephew

just as we were called. Watching James go under the anaesthetic had both Symon and I in tears. We had been warned it could take a couple of hours but at three and a half hours with no news Symon and I decided to go and take the tour of NICU we had been offered. We arrived minutes after James had arrived from theatre so we were there when he was extubated and amazingly he croaked his protest.

Professor Pierro explained to us that James had indeed had a diaphragmatic hernia, which had been repaired and the left kidney repositioned, but he had also had to remove a portion of James' left lung, as it was apparently useless. James astounded the NICU staff with his resilience. He never needed to be intubated again, though it was close a few times. He managed to breathe by himself and rested with the help of C-PAP. The nurses turfed me out to eat on a regular basis and I carried on expressing! I remember laughing when the nurse commented to me that he thought all James was really interested in was when he could eat again! Sunday afternoon he got his wish! By Monday James was breastfeeding and I was delighted not to have to face the machine again! Tuesday saw myself, James and 30 bottles of breast milk return to our local hospital. Wednesday evening we were allowed to go home with strict instructions to come straight back if we needed anything or were worried.

It has taken us a long time to relax over James. Each milestone a relief, first full night's sleep (about 10 months!) first cold, first Christmas, first birthday. Nothing ever seems to be easy with James, every illness seems to hit him harder but I will admit to being slightly irrational over him. Our main problem still seems to be that even when he is ill he never looks it! Everyone still looks at him and says, "He's not sick" - it drives me insane! Overall though James is healthy and although we are still having hospital appointments and tests (now for kidney function) James is such a ratbag it is impossible to become overprotective of him! Much of last year remains fuzzy in my memory.

When I think about it, I can remember every moment but I think that I choose not to in daily life but rather to get on with today. One thing that does stay with me is a sense of how lucky we have been with James. Knowing now what I do now about CDH, I am grateful that James was so healthy and huge to start with! When I get fed up with the latest medical hassle I always remember how much worse it could have been. My heart goes out to anyone having to cope with CDH or to watch a loved one fight it."

Sincerely,
James' mom, Carolina Chalk, (Great Britain)

July 3 - Dear Nicholas Sparks (Guest Bloggers Mary Sierra-Hales and Joseph Revelle Hales)

Dear Mr. Sparks,

My name is Mary Sierra-Hales, 27 years old and a mother of three girls and our darling little boy, Joseph Michael Hales. Joseph Michael Hales was born on April 7th and died April 10th of 2001 from severe birth defects, one of the major ones being a diaphragmatic hernia.

When I first found out I was pregnant, I was a little scared but happy at the same time. I knew in my heart that this baby would be a little boy, the answer to many prayers for my husband and I to have a son. We had longed for a son for a long time, so when the doctor confirmed that I indeed was carrying a boy, we were overjoyed. That joy was to be very brief for us.

My pregnancy went better than expected, for I am considered high-risk for pre-term labor and other problems associated with pregnancy. I kept all of my doctor's appointments, exercised, and ate healthy until the week before he was born. I had gone into the hospital for pre-term labor and complications from the flu. Little Joseph's heartbeat was acting up, so I was sent for a fetal echocardiogram. The doctors assured me that there was probably nothing wrong.

At that appointment, I spent three hours on the table as the doctor checked my son out. After much delay, I was told that my son had a congenital heart disorder that he would survive, barring nothing else was wrong. My heart sank and I felt that God was telling me to prepare because the worst was yet to come.

One week later, I was airlifted to a hospital about three hundred miles away from home. Things had gotten worse, and I could no longer hold our son in. I prayed as I was being flown to Corpus Christi, Texas, where Driscoll Children's Hospital is located. As I delivered him, I prayed for things to go well, but they did not. I remember so clearly as the doctor pulled our son out of my womb that he was squirming and had cracked his little eyes open. He was huge for being only 33 weeks gestational age. He weighed in at 6 pounds and 10 ounces! I saw him, and I hope he saw me too. I cried because he looked so perfect. As soon as they cut him away, he went downhill and soon went into cardiac arrest. The doctors did not know the extent of his disorders. They tried to resuscitate him but blew the only good lung he had. Meanwhile, Joseph, my husband, had arrived at the hospital where I delivered. He did not see our baby and did not know what was going on until he was pulled aside and had to sign forms for life support consent. He did not know how to tell me that our son was very ill. I took one look at my husband's face and cried. My attending nurse in the recovery room, Lori, was there with us as we heard the news of our son's deteriorating condition. She cried with us and tried to comfort us as I was wheeled out into the hallway to look at my son, just in case he died and I did not get the chance to see him alive again. He looked so beautiful despite the tubes and monitors. I wanted to hold him but settled with touching his arm and telling him that I loved him very much. He was then taken to Driscoll.

Those three days were such a blur of activity and sorrow. We got phone calls and visits from family and friends. I had a pass to go see my son for a few hours and spent the time kissing him and telling him that mommy loved him so very much and that mommy would be there for him no matter what. The team that took care of our son was excellent. They were very kind and caring. The head of the team, Dr. Karl Serrao, kept us informed at all times and took care of little Joseph as if he were his own son. He explained to us all the things that were being done to help our son, including the two types of ECMO that were used and why they were keeping him on life support (they were trying to give him every possible avenue of treatment so that he might live).

Finally, on his last day, we went into a conference with the doctors, and they laid it all out for us. Our son, tough as he was, was not going to live. He had the congenital heart disorder aggravated by the diaphragmatic hernia, the total agenesis of his left hemidiaphragm, one non-developed lung, one non-developed kidney, a rare kidney disease, and he had had two strokes the night before. Karl gently told us that it was time for our son to go. Joseph and I had already discussed taking our son off of life support, so we consented to sign the DNR (Do Not Resuscitate) orders and the forms for a full, unrestricted autopsy that they might learn more about his conditions and someday be able to help other babies in similar situations. We could not hold that back from other children; our son was going to help other babies, even in death. We cried as we consented and the doctor (Karl Serrao) did the most amazing thing. He was crying with us and came to us and held us both. He felt our loss almost as much as we did.

At our son's bedside, we took turns kissing him and touching him. I studied his little face and did my best to learn every inch of his body--his eyes, nose, toes and fingers. He started to go after daddy told him it was okay to go and not to be scared, but then he stopped and kept on fighting. Our son wanted to hang on. Every time he started to go, I went to him and told him I loved him. He would fight on until finally, I leaned down, kissed him and told him that it was alright to go, that Mommy would miss him and not to be scared, that we would see him again someday--as I said this and bent down to kiss his little nose, he died. I think he was waiting for me to tell him that it was okay to die and leave us. My heart broke into a million little fragments that seemed impossible to pick up. My husband and I were devastated at his passing.

Our son was so very ill. He had all of the odds stacked against him. At the autopsy report conference, we were assured that we did all we could for our brave little boy, but he had not even a fraction of a percent of a chance of survival. Yet with all of these odds, he still held on for three days! He was so brave and so strong. He had the diaphragmatic hernia, severe heart defects (at least three, I believe), Potter's Facies (kidney disorder), one lung, one kidney, virtually no spleen, and the strokes, but still he held on until we told him it was okay to die and not to be scared of what was about to happen to him. All of the congenital disorders combined made his case extremely rare. The doctors learned a lot from doing the autopsy--enough to be able to better handle such a rare case like his. For this, we have a little bit of comfort in knowing that maybe someday, other children will benefit from his loss.

It has been almost two months since our little boy came into our lives and changed it forever. Not a day passes where my husband and I do not cry and think of him. We are trying to adjust to life without him. The emptiness seems almost as deep and as endless as our love for him. We hug our other three children all the more tightly and love them all the more that we can. We are trying to live each day as best as we can, but it has been very hard so far. We realize that the journey on the long road in grieving and some sort of recovery has just begun for us. We have had the support of our family, friends and church ward (we are Mormon) to help us out. We keep in contact with Dr. Serrao and a few of the people that were there for us as we went through this ordeal (the chaplain at the hospital, social coordinator, and the nurse that attended me after my son was born). They have been just wonderful in supporting us and reassuring us that our son is in a better place, with no more pain and lots of love and care while he waits for us to go with him.

It is such a credit to our son's valiant spirit and willingness to live that he held on. He was certainly a strong little boy with a strong spirit and a strong heart. My family and I will miss him and feel grateful to have the opportunity to share our story with other CHERUB families. We now know that we are not alone. Sometimes when we are really having a tough day, all we have to do is think of how beautiful he is and how blessed we were to have him those three days and realize that he is a perfect little angel with God and we feel much better. I want to thank everyone that did all their best for our son, especially the team at Driscoll headed by Dr. Karl Serrao. We love all of you for all that you have done and still do for us. I close this letter with a small saying that we saw in a grief pamphlet that brings us much comfort in this time of need (we love him and miss him so much that it hurts):

Jospeh Michael is a twinkle in our eyes, in our hearts, and now in heaven. Forever loved and missed by his sisters Kristen Lorraine, 10, Amber Jeanne, 8, and Anna Elise 2 1/2 and by mommy and daddy.

Sincerely,
Mary Sierra-Hales and Joseph Revelle Hales and Family (Texas)

July 2 - Dear Nicholas Sparks (Guest Blogger Scott and Penny Campsey)

Dear Mr. Sparks,

Our buddy, Cole Patrick Campsey was born on March 26, 2003 at 4:53 PM weighing 5lb. 5oz. in a small town in Virginia. After a "perfect" pregnancy and normal labor, he was finally here! He is our first and only child. My husband and I could not wait to see his face and meet him. We waited 9 months for this exact moment. I kept wondering why I wasn't holding him yet....I really want to hold my baby!! Then, the Dr. said he is having trouble breathing.."come on little buddy, you can do it". That's what the DR was saying, little did I know it was much more than that.

I had no idea something could be wrong with him. I had many ultrasounds because my doctor had his own Ultra sound machine. Everything always looked good, or so we thought. Cole was handed to be for maybe 2 seconds to hold him and then they took him away. How can that be? We waited so long to hold him and he is gone again.

There was a pediatrician making rounds, who is truly an angel to Cole & all of us. She immediately jumped in to work on him and happened to be 5 months pregnant herself! She intubated him and started the series of tests, X rays, etc. My poor husband was running back and forth from me to Cole and then I had to pass out! The pediatrician came in and said Cole was going to be transferred to another hospital. WHAT? I thought he just needed some time to get stronger, but the look on the Doctor's face and my husband's face told me it was serious. The next thing I knew my husband asked my mom to come in the recovery room to be with me. It was decided by the physicians due to Cole's unstable status that he would be life flighted to The University of Virginia (3 hours away). The felt assured he would need ECMO.

I went say a "see you soon" to Cole, not a good bye. I touched his little hands, his feet and rubbed his head. I felt so helpless seeing him there with all the tubes. The doctor mentioned something about a hernia. Well, all I knew about a hernia was that it was something you got when you lifted too much. How in the world could a baby get one. Then she showed me the X ray. His intestines and his organs were not where they were supposed to be. While my husband was still driving, Cole was admitted to UVA at 12:01am. The admitting physician gave me a call to give me a diagnosis of Left sided Diaphragmatic Hernia.

I was sent home the next morning .. well actually I told them discharge me or I'm leaving. But was readmitted that same night with a high fever and an unexplained infection which kept me away from my husband and son 4 more days. Those days felt like years! When I finally got to the NICU, I saw the name COLE on the end of his little bed and a picture of a sailboat drawn by another child. As I walked over I saw him and the tubes, wires, and the machines keeping him alive. My heart broke! Nothing can ever prepare you for seeing your baby like that.
The hernia repair was done on his 5th day of life. He was on the oscillator. He had a hard time getting on the ventilator they wanted him to be on for the surgery. They had to try him several times, and finally he was stable on it just long enough for the surgery to be completed. I was so anxious for the surgery because I knew it would start his recovery. Immediately after the surgery he had to go back on the oscillator.

We were finally allowed to hold him after his chest tube was removed on the 10th day. I cant explain how good that felt. Finally, I could hold my baby and he could feel me holding him! After 2 failed attempts, he was taken off the oscillator at 14 days. When he came off the oscillator we could finally see his face! What a happy day! He required continuous oxygen via nasal canula and stayed on that at home until he was 3 months old.

He was discharged home after being at UVA 31 days.

He has had many feeding problems to overcome and poor weight gain since he started eating. He is still very small for his age, suffers form severe reflux, which is treated with medication. He receives speech therapy once a week, and his speech is improving daily.

He has had several hospital admissions for stomach bugs, dehydration, undescended testicle & circumcism at age 2, tonsils/adenoids removed at age 3. But, those were a walk in the park compared to what the poor guy had been through!

He is in preschool, loves it - and will go to Kindergarten next year. He has many friends and other than being a bit small, you would not know anything was ever wrong with him. He will be 5 years old next month!

Sincerely,
Cole’s parents, Scott and Penny Campsey

July 1 - Dear Nicholas Sparks (Guest Blogger Emily Groce)

Dear Mr. Sparks,

Hi! I am from Timpson, Texas and have lost a son due to CDH. We were expecting Kaleb Matthew to be born the end of October 2002 healthy and well. That is until about 32 weeks when I began swelling terribly due to polyhydramnios. The doctor got worried about it and finally at 33 weeks, it was discovered that Kaleb had CDH. This is after the technicians at Memorial Hospital in Nacogdoches told me that the baby was healthy and that both lungs looked great.

After a week in Galveston, Texas my NST showed the baby's heart rate to be in the 190's. They immediately rushed me into surgery for an emergency caesarian section. When Kaleb was brought into this world, he actually cried twice. He was then taken to the NICU.

He was born at 11:22 a.m., October 3, 2002. He was doing fine until midnight that night when the doctors came in ad asked me to sign the papers to have him put on ECMO. I told them to do whatever they could to help him. Five and a half hours later they came in and said that fluid had built up around his heart and had caused it to stop beating on it's own. A drain tube was placed in his chest to drain the fluid.

For 4 days we hoped and prayed that this would help him to pull out of this. He was 7lbs., 20.8 inches at 36½ weeks and looked like the healthiest baby ever. On the 4th day, the doctors said they would do the tests over the next day but didn't expect to see a change. We called our families and pastor to come be with us the next day.

The next day, October 8th, the tests were done and deterioration was found in his little heart. He wasn't a candidate for a heart transplant because of the CDH and there was nothing else to be done. Slowly the machines were turned down and Matt and I sat and watched our little angel slip away. It was the hardest thing I have ever done to tell them to do it. Our 2½ year old son could not understand why he could not have his baby brother, but a kind lady in the waiting room explained it to him and also said the rain outside was Jesus' tears. All the nurses, doctors and technicians that were with him stayed right by our side through it all. They even cried right along with us. His doctor, Dr. McKinney wanted to do an autopsy to find out what happened because she believed he had a heart attack. We buried him on October 11th in Timpson, Texas. We later found out in the autopsy results that the ECMO had somehow bruised his heart but they said that without it he would have only had a 15% chance of survival. So it was necessary for the two surgeries he had to have. We had a wonderful 5 days with our son and truly miss him. The doctors, staff and everyone at UTMB was wonderful to us, as well as the people at the Ronald McDonald house and all the wonderful help we have received from CHERUBS. God Bless and God Keep!

Sincerely,
Kaleb's mom, Emily Groce (Texas)