Cheffer, Matthew

[left:00c70889b7]http://www.cherubs-cdh.org/Album/new/cheffer-matthew.jpg[/left:00c70889b7]I found your group on AOL recently when I finally decided to research my son's birth defect. I can not explain how good it felt to receive your newsletter and realize that there is now other people to talk to about what my son and I and other families had been through. Thank you for your group.

Well it is almost 1am, Sept. 13, 1997. With tears in my eyes I have been sitting here reflecting about this time three years ago. 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.



Written by Mathew’s mom, Patricia Cheffer (Pennsylvania)
1998