Motley, Brandon

Hi my name is Michelle Motley and I just needed to write to parents about my experience. My son Brandon was born on 5/13/94. During my pregnancy everything was "normal". I was seeing a midwife and my husband and I expected a healthy baby boy. When Brandon was born everything seemed normal until the nurse said that he was making gurgling noises that weren't normal. They took him to the newborn ICU and did some chest ex-rays. My Mother in Law was getting worried and I told her that there was nothing to worry about (little did I know). About 2 hours after he was born the doctor came in a confirmed that he had a diaphragmatic hernia. His left lung was only 20% developed and the right was 80 % developed. They also said that they weren't sure if he had eyes. Brandon was then taken to Primary Childrens Hospital. And had repair surgery when he was 12 hrs old. During all this time I didn't realize how bad things were. Brandon came out of the surgery and he looked so helpless. The hardest thing for me as a Mother was watching the nurses and the doctors poke him. Brandon led a very eventful life. After he came home from the hospital we tried to make things as normal as possible. When he was 5 months old we packed the car up with oxygen tanks and went to California to visit family. My dad had gotten a full size tank for his house. When he was about 6 months old he got sick and went into the hospital for the last time. While there he was trached and never got off ventilator support. He was back and forth between the hospital and a nursing home. Brandon continually worsened and I knew that there was nothing that the doctors could do. My husband refused to let the doctors take him off life support. Finally after the doctors explained to my husband that his kidneys were failing and everything else was going my husband agreed to let go. Because we were afraid of Brandon turning blue when he was taken off we decided not to be there. A family friend was there. Let me tell you that was the biggest mistake of my life. I saw my son the day before and kissed him 80 times (to symbolize every birthday that I felt that he should have had). I will regret not being there for my son that day, but I know that he has forgiven me and his dad. We buried him in California and we plan on moving there soon so that we can be near him. Brandon was the best thing that ever happened to me. He was a happy beautiful little boy. He did things that no one thought he would ever do, like smile …because of no eyes they said that he wouldn't smile, of course he proved them wrong!!!!! We have 2 more children who are perfectly healthy and I am grateful for them, but I know that Brandon is always with me and I know that I will be with him again someday. I'm sorry that this was so long, there are still so many things that could be said about Brandon but there isn't enough time in the world to write then. He was a exceptional baby and I appreciate the opportunity finally to put some of what I feel into writing to parents that understand …Thank you


Written by Brandon's mom, Michelle Motley (California)
1999