Alex Cooper
My daughter, Alex, was born with Hirschsprungs Disease on July 5, 1996. Sadly, Alex died from enterocolitis on November 24, 1996. I hope this is okay to write to you, but I need someone to read Alex's story who has some experience with Hirschsprung's Disease. The doctor's don't know that much about it. I know that Alex didn't have a 'textbook' case of Hirschsprung's Disease. Please help me understand this.
Alex was born on July 5, 1996, almost three weeks early (due on July 21, 1996). She was delivered by a midwife at the birthing centre that joined the hospital. She weighed in at 7 lbs. 3.5 oz and was absolutely beautiful. She had lots of downy dark brown hair that always stood straight up on her head. This was her trademark. Everyone loved her hair. Alex was an angel. We felt so blessed to be her parents. She loved to be held, hardly ever cried, and had mild colic only a few times. She was so precious. We really doted on her. She was our second child, but for some reason we knew she was special. I had a feeling that Alex was only going to be here for a short time. This sounds crazy because she was perfectly healthy. I would just push that feeling aside when it came. We loved her so much. I never knew what love was until we had Kate and I never believed that love could be duplicated until Alex.
Alex never passed her meconium and wouldn't breastfeed for 36 hours after she was born. We were admitted to the hospital again so she could be monitored. The paediatrician forced Alex to pass her meconium and did a couple of x-rays. The x-rays showed an enlarged bowel, but he felt it was because she didn't pass her meconium immediately after birth. We felt confident that he was right and never really gave it a second thought.
Two weeks before Alex died, she wouldn't breastfeed anymore. This really bothered me, but she would take the bottle very well. We always supplemented her with formula, so we weren't too concerned about giving it to her. She seemed to be getting constipated from the formula (which we also understood to be normal). I gave her a suppository and she would have a bowel movement. However, I still felt something was wrong. My husband felt that everything was fine. On Friday November 22, we took her to the family doctor. I was sobbing uncontrollable as I told her Alex's symptoms.
--> she hasn't been eating properly --> she vomited the previous day --> her stool was round and hard and smelt awful --> her rectum was very red and fleshy when she pushed
The doctor checked her stomach to make sure everything was working properly. She checked her temperature and it was 105. I was astonished. We didn't even know she had a temperature. She took Alex's temp rectally and Alex had a bowel movement. She saw her rectum and told me that her stool was normal and that the rectum gets red and fleshy when babies are constipated. She assured us that Alex only had the flu. I asked her how a baby could have the flu for two weeks. She said that this was possible. I also asked her if she was sure that this had nothing to do with when she was born. After leaving her office, we felt relieved and assured that Alex only had the flu. We weren't to worry if she didn't want to eat because even adults don't like to eat when they are sick.
The next day and a half went by with more flu like symptoms. We were forcing Alex to drink water. We were constantly feeding her water from an eye dropper because she wouldn't take the bottle. My husband, Allan, and I were taking turns staying up with her that night. At 2:00 am she finally drank 3 ounces of water by herself and was looking much better. I woke up Allan to take his turn. I was so excited because I thought she was getting better. So did he. At 4:00 am he fell asleep with her on his chest. At 5:00 am he woke up and she was barely breathing. We rushed her to emergency. They worked on her for a while. It was terrible. Her body just shut down. I never thought for a second that she was going to die.
The autopsy showed that she had Hirschsprung Disease. Hirschsprung Disease is where a portion of the bowel is missing nerves. In her case, it was the descending bowel. The way I understand it is that she died from toxic shock. We found out after she died, that the paediatrician had ruled this out at her birth because she started eating and having regular bowel movements. She also was gaining weight well. Generally Hirschsprung babies are colicky and do not thrive. Maybe this is because she was breastfed.
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There is a lot more happy stuff in the middle of this story. I have been writing them out slowly. I dwell mainly on the last week of her life. I used to believe that doctors knew everything. Not anymore.
Thanks for reading Alex's story.
Jeannie Cooper
To see pictures of Alex then please go to Heavenly Playground