November 16, 2010 at 2:10 am #7373
HI I’m Dana. In April of this year my newborn daughter Rebecca Faith was born. We knew from early in the pregnancy that something wasn’t right. At 20 weeks our worst fears were confirmed, she was diagnosed with Hypo-Plastic Left Heart Syndrome (HLHS). Basically that means she had half a heart, the left side did not form properly and after birth there was a 3 stage open heart surgery that she would have to undergo. We were sent to Children’s Hospital in Philadelphia and soon that became a normal part of our life. One good thing about having a sick baby is that we got to see her on ultrasound every couple weeks. My husband and I liked that part. But as the weeks and months continued we were faced with the fact that our daughter was a very sick baby and might not make it. The doctors and us decided on a plan for after her birth, cause that’s when all the trouble would really start. When she had to breath on her own and support herself. After she arrived she was wisked away for her first procedure, to place a catheder in the hole that connected the two top chambers. That went well, and she was soon settled in her own room in the CICU. After she was born though she was diagnosed with a rare genetic disorder, Rubinstein-Tabyi Syndrome (RTS). It’s a severe mental and physical delay and very serious. The doctors were not optimistic, but most of them weren’t throughout the whole process anyway. I wish my story was a happier one, cause the very next day after her birthday she passed away in my arms. The doctors told us she was one of the sickest babies they had seen in a very long time. She would not be able to get through the first stage of her heart corrective surgery. Because of the RTS the right side of her heart was very weak and medicine had to used to stimulate it to even pump any blood out to her body. My husband and I decided to remove life support and hold her as she passed. The very first time we held her was our last as well. We were surrounded by all of our immediate family and we all got the chance to hold her even our 3 year old daughter Savannah. It has been a little over 7 months now and I still can’t really believe that she has already been and gone. Especially now with the holidays coming and the fact that this time last year I was pregnant with her. I struggle with depression and am seeing a counselor. The counseling is helping but there are days that I wish I could stay in bed and never get up. Of course with a 3 year that is not possible, and I know it’s probably good because life has to go on. I just have to figure out a way to go along with it. I would love to chat with someone who has some idea of what I am going through.November 17, 2010 at 10:22 pm #9113
Dana, I am so sorry for you loss. Have you read this blog? http://fierceandfiesty.blogspot.com/2010/10/intactivism.html
Her son died as a result of the same condition just last month. Perhaps you will find some comfort in her words and perhaps other parents who experienced the same loss.
I wish you the very best.
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