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Our daughter Brooklyn Ann was born on December 9, 2002 she was our 1st child and was 3 days late and 8.11lb's Big and healthy we thought. The nurse heard a murmur and the Dr. said no she heard wrong 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 6:15 at night we went to his office. He then tells 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 min's latter 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 prob. will not make it. But a 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 eight and even though we were told that her mitral valve would last till she was 60 years old it is now failing. She has been at a severe rate for 4 years now. Her body is doing well with a sick heart so the drs will not fix her until the body starts to fail. They need to put a mechanical mitral valve in her that will have to be replaced around her late teen years. She is also due to have her cadavers valve replaced to a bigger one as she grows. As of now her cadaver valve is from a 6 month old.
Brooklyn is sleeping 13-15 hours a day. She has a learning disability but other than that she is running and playing with her friends, you would not know she is waiting for her 4th OHS if you saw her on the streets. Brooklyn sees double vision so wears prism glasses when reading and her left ear is not connected to the brain which means background noises causes her to not hear well at all so she uses an FM system. Brooklyn has had 2 non related heart surgeries in the last 2 years also. She is one tough girl! Steven and I know how blessed we are to have her each day and we are grateful for everyday she is with us. My prayers go out daily to all of the families who have lost a child to CHD<3<3<3
Steven & Alison McGough