The Beginning
The diagnostic odyssey to Tay-Sachs
Matt and Myra, parents of Havi and Kaia discuss Havi’s first year and the steps they took when they began to realize that her development wasn’t progressing in all the ways they expected at her 12-month appointment with her pediatrician.
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The diagnostic odyssey to Tay-Sachs
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.
“I internalized that to be competent meant not to cry; You do what you think is needed to get good care for your child.”
Cardiomyopathy: My welcome to motherhood – dreams and hopes shattered.
Cardiomyopathy: A mom on arriving on the cardiac floor and finding community.
Undiagnosed: “28 years and we still don’t know exactly”
Tay-Sachs, Twin fathers and their diagnostic journey with their two children