Yesterday, we met with the Director of Neonatology at the hospital where we’ll have our kids. He was a warm and kind and very patient man (he gave us one hour of his day with essentially zero notice). From Egypt, his accent was familiar and comforting, and his compassion was deep.
He gave us a very strong dose of reality about our son: about his first few days, his multiple surgeries, and really the first few years of his life (children with HLHS are very suceptible to all kinds of otherwise common problems, and, should he survive the surgeries, we should still expect him to spend about 50% of his first 3-5 years of life in the hospital). He gently challenged us toward the possibility and propriety and kindness of letting go, if that seems appropriate at the time.
At the same time, he affirmed his desire and ability to offer the absolute highest standard of care to our son should he need it. He is exceedingly familiar with the condition, having worked with many, many cases. He is world-reknown for his work with all kinds of sick newborn children. And my wife has worked with him many times before, so our confidence in him and his department is complete.
When we were thanking him and leaving, he wrote his cell phone number on the back of his card. “I have my phone on 24 hours a day. Please call me when you are going to the hospital. I want to be there when your son is born,” he said, and looked deep into our teary eyes. Namaste.