Stories of Lost Children
Raegen's Fight
by Caressa, Houston, Texas, U.S.A.
Raegen was born on September 23, 2000, six weeks early with a condition called gastroschisis. Her small intestine was left outside her body thru a little hole when she was developing inside me. The hole closed and cut off the blood supply to her intestines. She was rushed to Texas Childrens Hospital when she was just 8 hours old. After Raegen's intestine was resectioned the surgeon told us she was only left with 15cm of small intestine(normal babies are born with about 300cm). He told us we had three options: let her die now; start her on IV nutrition called TPN which causes liver disease; or transplant. We started her on the TPN and immediately had her listed for a small bowel transplant. The TPN was started thru a central line in her chest when she was 3 days old. We brought her home for the first time on December 19, 2000. Just in time for Christmas. I had to learn how to take care of her lines, get her TPN ready,and because she was also given a gastronomy tube and an ostomy become an automatic nurse. I learned everything I could about kids like her and took care of her all by myself. Even thru our countless hospital visits for infections and fevers I made sure that I was her primary care taker. I didn't want my baby used to anyone taking care of her but me. At 6 months we started noticing the liver disease getting much worse very quickly. The thing about TPN is every kid reacts to it differently. Liver disease causes the blood to stop flowing and will back up and cause GI bleeding which is what ultimately killed Raegen. Her liver shut down and she bled out on July 1, 2001. The only comfort I have is thru all the surgeries (3 major and 4 minor) and all the problems Raegen was the happiest baby in the world. She has left behind a mother and father and 2 big sisters that love and miss her very much! I had no idea.
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