Rubinstein-Taybi Syndrome

‘As I lay on the operating table, I heard the ONE word I dreaded. They wrapped him up, brought him over. I began to sob. ‘How can my heart be rejoicing and breaking at the same time?!’

“The room began spinning. I was thrilled to have my baby but terrified by the words used to describe him. Unlike his older brother’s birth, not one person came to see him. No flowers were delivered. No one knew what to say, so they said nothing. On that day, my life became defined by two words. Before and after.”

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