Oosterhoff, Tyler James

[left:76c83d198f]http://www.cherubs-cdh.org/Album/new/Oosterhoff-tyler.jpg[/left:76c83d198f]I want to tell you what a wonderful thing you have done by creating a terrific support group. My husband and I really like to read the newsletters and looking at the CHERUBS web page. Hopefully some day between technology and unfortunately more cases, the medical society will find more reasons on how and why CDH occurs.

My son Tyler was born on March 28, 1995 with left side CDH. We had absolutely no idea our lives were going to change on that day. I should say that Tyler is our second child. Both of my pregnancies were normal and I had no problems. Taking that into consideration, my doctor felt I did not need an ultrasound. To this day I have mixed feelings regarding that decision. Everything went wrong that day. I delivered Tyler naturally and he came out pink and crying until my husband cut the cord and he turned blue. The nurses and doctors immediately began bagging him. As far as we know he was never without air. They rushed him out of my room and began calling every doctor. I was still laying in my room with my husband by my side not knowing what was going on and all of a sudden we heard "code blue in the nursery". During this time my doctor hadn't finished with me yet. This hospital was not equipped for these kinds of emergencies but they did a remarkable job keeping my son alive. While they were working on Tyler, my doctor finally came and finished with me. After I was done he went back and stayed with my baby and assisted the other doctors. In the meantime, my nurse came in to push on my stomach and I started hemorrhaging. When this happened my husband was in the nursery trying to find out what was going on, all of a sudden he came down to talk to me and they wouldn't let him in the room. I ended up having a complete DNC. Needless to say, my husband nearly lost two very important people in his life. The good Lord was definitely on our side that day. Tyler was bagged by hand for 7 hours before he was transported by ambulance to the University of Chicago NICU. They brought him in so I could see him before they left, I barely could see him with all the machines he was hooked up to and I was very weak from the hemorrhaging. I was so scared because I knew that I may not ever get to see him again. They only let me touch him a split second before they rushed him away. My husband and his parents went to Chicago, IL while I stayed overnight in the hospital in Crown Point, IN with my parents and our 2 year old son Austin. We are so thankful that we have great parents and family we could not have made it through all of this without them. Anyways, Tyler was stable when he left and had just enough oxygen to get him to Chicago. Right after they got there he took a turn for the worse. The doctors, nurses, and my husband kept in touch with me through the night so I knew what was going on. I was released from the hospital the next day only if I promised to go home that night and get some rest before I started out on a very long haul. Tyler was put on ECMO right after he got there or he was not going to make it. He remained on ECMO for 22 days. He was born on a Tuesday and on Friday he had his hernia repaired. They told us his hole was the biggest they had ever repaired. It was closed with a piece of gortex. While he was on ECMO he caught a real bad bacteria infection in his blood which was scary, but thank God that is the only thing that happened. He was a month old before we were able to hold him for the first time, so you can imagine how emotional that was for us. He came home on May 22, 1995, a lot sooner than anticipated. Beth Zimmerman, who is one of your board members was one of Tyler's nurses and if it weren't for her we would have never been prepared for his homecoming. She's also the one who recommended us to your support group and I'm sure glad she did. Anyways, Tyler came home on oxygen which he came off of that September, feeding tube and an apnea monitor which he came off of 2 months later. I would like to say that throughout this ordeal Tyler had his weight in his favor, he was 9lbs 6ox and 22 inches long and it's a good thing was a big baby because he handled all this a lot better I think. Tyler has gone through physical, speech, and developmental therapy since he first came home and just graduated in Dec of 1997. Sooner than they anticipated. Since coming home he has had only 1 surgery which was because he has an undescended testicle. That was out patient surgery and he handled it like a champ. He has never been hospitalized with any illness. Today as I write this letter Tyler is going to be turning 3 years old in a month, and a day does not go by that I don't look at him and thank the Lord for giving me my little angel, well he's not so little. However, Tyler has developed a small hiatal hernia and will need to have surgery again in the future to repair it. His doctor would like to wait as long as possible so that he will be that much stronger to handle this surgery. He also has reflux which may require all we have had to deal with. I do ask that when the time comes you will keep him in your prayers. Even though there is so much more I could say about our situation I hope that this will help someone who is going through this that sometimes things don't turn out so bad. My son is a typical little boy who leads a normal life and aggravates his older brother. Tyler has no restrictions on what he can do and is a fighter. Nothing bothers him or scares him. To all of you who read this, may God bless all of you in the future and to those who have lost a child to this birth defect my heart goes out to you. Thank God for our little cherubs living and deceased who have touched our lives and given us a new outlook on life. I would love to hear from anyone who wishes to write or e-mail my husband and I. Again Dawn, thank you for all that you are doing.


Written by Tyler's mom, Debbie Oosterhoff (Michigan)
1998