Hi my name is Alison McGough and I am Brooklyn's mom
Check out Brooklyn's story
Brooklyn has Shones Syndrome a sublet of HLHS
She has had 4 OHS's and has more to go.
We were told at 1st that the Norwood, Gleen and Fontan might be in Brooklyn’s future. They said that they would try to avoid it if possible. We prayed they could b/c what we knew was if she had these 3 OHS she would most likely need a heart transplant in her future. At 9 days old she went in to CHF and was rushed to the hospital. She was flown to Atlanta’s children’s hospital @ Egelston where at 14 days old she had her 1st OHS they did the Cortication repaired. Her 2ed OHS was a Valve Replacement which failed. Her 3ed OHS was the Ross/Kono they took her pulmonary valve and put it where the Aortic use to be. Then they took the cadaver valve of a 6month old and put it where the pulmonary valve use to be. Her Left ventricular was too small so he cut a hole in the wall to expand it and put a patch on it. She has had MANY angioplasty’s (I don’t even know how many, lost count) but always we were able to avoid stints. We were told that she could live with her mitral valve till her 60’s but 3 years ago it started to fail. They said 1-3 years we would get the mechanical mitral valve. It has been 3 years and she is at a severe rate but her heart is still handling the stress. The Dr’s want to wait as long as possible before giving her this new valve. The bigger she is the better. They watch her closely and each time they give her 3 more months. It is like a ticking time bomb. She was tube feed for the 1st year. After each surgery they would bruise her left vocal cord and so it was paralyzed temporally. The vocal cord is wrapped around the aortic arch so they would have to move it out of their way when working on her heart. At 10 years old she had her fourth open heart surgery, they repaired her mitral valve instead of giving her a mechanical valve, she is doing well. Today she is 12 years old still going to the cardiologist and waiting for the cadaver valve to be upgraded. We are so blessed!
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