Tell It To Me Straight

When one of your child’s doctors needs to share news – significant news – with you, how do you want him/her to do that? What if it is news that most people would consider bad news? What if the news will cause a shift in the universe of your life?

I’ve been pondering these questions myself after reading two articles recently about how doctors should deliver a diagnosis of Down Syndrome. One article from the Journal of American Academy of Pediatrics talks about how best to deliver a postnatal Down Syndrome diagnosis. The other, from the American Journal of Medical Genetics, talks about the same thing, but from the view of a prenatal diagnosis.

Both of the articles depended heavily on surveys of parents, and the number one thing that the parents said? Don’t say, “I’m sorry” or “Unfortunately, I have some bad news to share.”

I thought back to the times when Ashley’s doctors had to deliver significant news to me. First, when she had her second brain tumor removed, I didn’t get “I’m sorry”, but I did get the sad looks and slight head shakes which spoke volumes to me. This was the same doctor who went on to say I ought to place my child in an institution.

Then there was the news that Ashley would have to get a G-tube. The doctor delivering that news was perhaps the most compassionate, loving, intelligent person I have ever met. He was matter-of-fact with the news – he gave me the reasons why and why not – he told me what to expect – he told me how both my life and Ashley’s would change.

And finally, there was the news two summers ago that Ashley’s neurologist had discovered more brain tumors on an MRI he had ordered (at my insistence). He also didn’t say “I’m sorry” or “I’ve got bad news”. He told me the facts – told me to contact the neurosurgeon the next day – and asked me to stay in very close touch with him. The words were right, but the delivery was sad. The sadness and worry in his words sent me over the edge.

If I had to choose, I would take the approach of the second doctor – the one who told me about the G-tube.

I know everyone is different, but I am a person who must be given the facts, and then allowed time to process those facts. I need information on support groups and other parents who may have been through the same thing. I need to reach out when I feel like reaching out, and I need to know where to do that reaching.

But I never want to be told, “I’m sorry.”

How about you?

Today I am thankful that the first doctor I met when I adopted Ashley was Harry Gewanter. He became her advocate and one of my best friends!