This is the journey of Alison’s little girl Brooklyn, written in Alison’s words…thank you for sharing your story with us!
‘My daughter was born on December 9th 2002, she was my 1st child and was 3 days late and 8.11lb’s – big and healthy we thought. The nurse heard a murmur but the Dr said she had heard wrong and there is nothing wrong with your daughter, so we took her home. She was 9 days old when she turned gray and let out an adult cry. I called that Dr and at 6:15pm that night we went to his office. He then told us she might have an infection and we should take her to the hospital. He told my husband to take us because we would be faster than an ambulance. By the time we made it to the hospital 20 minutes later she had crashed. There were 13 people around my baby shaving her hair and working on her. We were moved to the private room where they told us she probably will not make it. But there was a Dr that was able to run a line through her umbilical cord to her heart and keep her stable so we could fly her to Ga. children’s hospital.
She had 3 open heart surgeries by 8 months old; she was tube feed for the 1st year due to her left vocal cord that was paralyzed from the heart surgeries. She is now almost six and even though we were told that her mitral valve would last till she was 60 years old it is now failing. They need to do surgery now but the death rate is very high for children under six and she is only 31lb and very small for her age so the Dr’s want to wait till she crashes and now I am back in the really scared stage again. They need to put a mechanical mitral valve that will have to be replaced in 10-15. Also when she decides to have a child they will put a tissue valve in her because it is safer during pregnancy due to the medication couminden. I know that technology can get better to. She is also due at age 10 to have a cadavers valve replaced to a bigger one. As of now her cadaver valve is from a 6 month old.
When my daughter Brooklyn Ann was a baby, I lived on the internet reading stories about children with Shones Complex. My husband got rid of the internet which was the best thing for me. It has been 5 years without the internet and I just got it. As you see I’m back on the sights. I just pray I do better this time. ‘
*This is a quick thank you for the beautiful picture that is on the top of my blog…the lovely Holly drew it for me, so thank you for doing that – you are very talented!*