The Beginning
Marfan Syndrome: He had 26 doctors and specialists and therapists. It was a free-for-all.
The mother of a son with Neonatal Marfan Syndrome explains his condition and its wide-ranging impact on many systems in his body leading him to have a huge medical team with various treatments and moving parts.
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Marfan Syndrome: He had 26 doctors and specialists and therapists. It was a free-for-all.
Andy, a diagnosis at birth. “I immediately asked, “what is wrong with my son?”
From diagnosis to death: “It was 8 months of an incredible psychological terrain.”
I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.
