Piner, Rex

[left:138131df61]http://www.cherubs-cdh.org/Album/new/piner-rex.jpg[/left:138131df61]I work at East Carolina University School of Medicine in Greenville, North Carolina. I have just gotten Netscape on my computer. I decided to try it out, and I typed in Diaphragmatic Hernia and came up with your name and the support group. I got so excited! For fourteen years I have felt alone about this subject, though God was with my son and I all the time.

I wrote you earlier and I have received some newsletters. I read through them and I just sat and cried. I showed Rex and I told my mother but they just didn't seem to understand how I felt about finding this organization. I am a single parent. We really could have used this support!

1980 I had a miscarriage at 5 months, it was a boy, he lived 2 hours, the doctor said it had something to do with my placenta not growing. On June 24, 1982 I was 8 months pregnant when Rex was born. I had no pregnancy problems at all, except lower back problems, which is normal I think. My water broke, I went to the hospital and had Rex in 30 minutes. I had a normal delivery. The doctor looked at me and the nurses and said he's not breathing, something's wrong. A couple of hours passed and a doctor came in and talked with me about Rex having surgery (I didn't quite understand everything) and that I needed to sign some papers so that they could perform surgery. The only thing I remember saying is, does he have to have this surgery to live? The doctor said yes. I did not know at that time that PCMH operated on babies that had just been born, I didn't even realize that we had a neonatal unit. One of the doctors told me that if Dr. Walter Pories had not just come to this hospital Rex would have had to be transported to Duke to have surgery, which is about 2 1/2 hours away and that he probably would not survive.

Rex did survive and we both fought hard. My church prayed for Rex, and that's something I am very grateful for. Rex had a hole in his diaphragm, they had to repair it and he had one functioning lung, and they had to move his heart over. He had tubes everywhere and he was on oxygen for about 30 days. They could not tell if there was any other problems at that time. He had over 30 x-rays. During that time I was with Rex about 12 hours a day. Every baby born at this hospital had died before or during this surgery. The doctors just couldn't really give us any information cause they didn't have any. During this time Rex went code blue a couple of times and there were other setbacks from time to time. I called the hospital when I got up in the morning to see how Rex was, then I would go to the hospital all day. I would call the hospital before I went to bed to see how Rex was. The doctor's and the nurse's were great. They even made me hold him everyday, it was hard at first with all the tubes but, it got easier and easier. After about 30 days they began trying to feed him, it was a slow procedure. He would finally take about 2cc of milk at a time. He then had his first bowel movement. They then tried to take him off of the oxygen. Then in about 3 days they decided to let us take Rex home. The instructed me on CPR. They said that he might forget to breathe on his on. Since he had been on oxygen for a month. They knew that I loved Rex with all my heart and that I would take care of him.

Rex was very lucky he didn't have any other birth defects. Since 1982 Rex has had bronchitis over and over. Rex's surgeon thought that Rex was having a recurrent diaphragmatic hernia. So in 1987 Rex was sent to Duke to be checked. But PCMH lost all 30 some x-rays that were taken at birth. There was nothing to compare. The doctors there just decided to leave it alone and see if any other complications would occur. There are no before and after films and that worries me a lot. I have tried over and over checking with radiology to see if they have shown up. They have not. What we did find out was that Rex was allergic to cigarette smoke. His Dad is a heavy smoker and that has not helped the every other weekend ordeal. It took me two weeks to get him well and then he would be back with his Dad again. It was a horrible battle. Doctors did not want to step in and help. Sometimes Rex would cough so much I was afraid his diaphragm was going to tear. He would throw up just from coughing. No cough medicine helped.

Rex is 14 now and he is doing great. He doesn't go with his Dad very often now. It's hard for him to fight off colds. He has a problem with his teeth, they are yellow and looked like they had holes in them. We have had bonding put on them, which has helped a lot. We don't know if it came from the 30 some x-rays or not. And Rex seems to know his limitations as far as sports go. He went to The Wilds, a church camp and has learned very quickly some things that bother him, for example hiking up a mountain. He came home and told me that he went hiking and how his stomach area hurt him really bad, he could not sleep all night. I asked him if he told anyone and he said no. he doesn't want to be any different than any other kid. Also there was an activity where kids run and jump on your back. He said that was painful too. He told me that next year he would not do certain activities. he was a pitcher for a Little League team in town and he loved it and felt good about himself. He tried karate, but when they started learning to kick he wanted to stop. I used to try to protect him from everything. But I have found out I have to let him grow up. I can't protect him from everything.

Rex is a great kid. He is very active in church, and is a member of our youth group. He is now in high school and a boy in his gym class asked him what happened to his stomach and Rex said, "I was bitten by a shark." He came home and told me this, and all I could say is "Rex!" I just shook my head, smiled, and rolled my eyes at him.


Written by Rex's mom, Mary Kay Piner (North Carolina)
1997