Recently I was researching a bit into my daughter’s heart condition. In previous generations, she would have been like Pearl. There were no reconstructive surgeries possible, and she would have died long before she was ever available for adoption. I never would have known her, let alone loved her and had father-daughter chats over hot chocolate, or gone sledding, or kicked a ball around the backyard.
My wife was shocked when I told her not every HLHS parent chooses surgery. There are two operation options these days–a heart transplant or a three-stage reconstructive procedure. Each carries its own risks. Ten percent failure rates for each open heart operation. The five-year survival rate is about fifty percent. Beyond that, the heart impairment during pregnancy or infancy seems to affect brain development, and some older children have learning or emotional challenges.
So not every parent chooses surgery. It happens in one out of three HLHS infants. My wife asked me, “Who wouldn’t opt for surgery?” I guess that some people can’t afford it. They opt for palliative care and make the small, slender life of their child as comfortable as possible for a rather short time. So it’s like the few weeks of life for little Pearl.
Things didn’t go wrong. God has designed Pearl the way he wanted, for his glory and our good.
Well, maybe. I don’t have a window into God’s plan. I’m not convinced the anguish of parents and a life ended in infancy is “God’s will,” as the headline suggests. I think it’s okay to suggest that tragedy like this is definitely not the intent of God, nor is it to be borne with passive acceptance by mothers and fathers. But I do think these sad situations provide us with opportunities. And it seems that many people are touched by Pearl and her parents’ witness of faith. And that is a good thing, a very good thing indeed, if by means of Pearl, a little more tenderness and compassion enters the world.
I still can’t get my head around the numbers on HLHS. I feel even more grateful for my healthy, well-adjusted daughter. One-third survive the womb. With her surgery one-half of those survivors live to age seven, if they were one of the seventy-percent who didn’t have complications from open-heart procedures. One half of those survivors have some developmental disability. And one-half of those survivors have emotional trauma that involves some psychological intervention. By my math, the young miss is one-in-35 to make it to where she is now, mid-adolescence. I should get down on my knees in thanksgiving for that more often than I nag her about finding a confirmation sponsor or worry about her possible career choices as a forensic scientist or a spy for the CIA.