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I just found out about this website and I am thrilled to be able to talk to other mom's with similiar experiences as mine. I have a beautiful 10 month old baby boy named Bryston. He is the light of my life. My child was just diagnosed two months ago with Alagille's Syndrome. It is a very rare syndrome, in fact it occurs 1 in 100,000 births. The syndrome affects the liver, heart, kidneys, growth and development, eyes, and other internal organs.
We are still going through the diagnosis process with my son. So far we know my son has mild cholestasis which affects the liver, and his liver enzymes are elevated.
Unfortunately Bryston's heart and liver are affected due to this syndrome. Bryston has peripheral pulmonary branch artery stenosis. Not only is his pulmonary artery very narrow, but so are the arteries that branch off his main artery. The doctor believes that the stenosis also continues into his lungs. The only way to be able to diagnosis the stenosis in his lungs is to do a CT scan. The doctor does not want to do this due to the radiation it would put into Bryston's body. My son is very little, he weighs 14.6 pounds (which is related to his health conditions).
We will see the Cardiologist in January to determine if the stenosis is getting worse and to measure the pressure between the right ventricle and pulmonary artery. What we find out then will determine the next steps. As of now, the doctor said there is no reason to do any medical interventions. The more time we allow for Bryston to grow, the better the outcome for him.
I look forward to talking to everyone and getting any advice y'all have to offer! I still don't know what the future holds for Bryston, but every new day with him is a HUGE blessing!
Welcome. I'm Mellie. My son, Zachary had tricuspid atresia, transposition of the great arteries, narrow aortic arch and a VSD (among other smaller heart issues). He also had a pacemaker from 8 weeks old.