Helping doctors to break the news…gently

IMG_0976Jillian Benfield, my social media pal from AZ, recently asked me for a couple sentences to describe our experience in getting the news from doctors that Jillian had Down syndrome. I could do it one word:

Awful.

Insensitive. Careless, witless, crass.

That was 1989. From what I’ve heard from new parents in 2016, it’s not a lot better. Twenty-seven years, and it’s not a lot better?

The doctor that told my wife Kerry said it off-handedly. Apparently, he assumed someone else had told her already. I wasn’t even at the hospital; I’d gone home to fetch our 3-year-old son from a neighbor’s, giddy to introduce him to his little sister. The phone was ringing as I walked into the door of our house, to retrieve some things before returning to Kerry’s room.

“They think Jillian has Down syndrome, Paul.”

If that wasn’t bad enough, they wanted to move Kerry out of the maternity ward the same day Jillian was born. The unsubtle inference being, “This is a happy place, and you are not happy.”

As I wrote in An Uncomplicated Life, that was the last bad day. We left the hospital the next morning, to begin our life’s work, which has been more of a blessing than we could ever have imagined. But the issue with the doctors remains.

Here’s a silver lining: A few weeks ago, a neonatologist at Cincinnati Children’s Hospital reached out to me. Here’s part of what she wrote:

“As a medical person, I have found a few gaps in our practice. The medical community has decided Down syndrome is a disorder we should screen for prenatally, yet we have no guidelines for what to do with that information, once we obtain it.”

She went on to say she was developing a program “to address this problem with a comprehensive approach to care and counseling, to address the medical issues, but also the emotional ones you talk about.”

Bravo!

Doctors have the medical stuff down pat. It’s the human side of it that needs big adjustments.

“I want these expectant parents to leave their visit with us better educated. . . and also with hope and knowledge that their child is a blessing, just like any other child.”

Perfect.

Children’s Hospital now has An Uncomplicated Life on a suggested reading list for parents of special-needs newborns. Once their budget has been established, they plan to buy multiple copies.

I urge all hospitals to consider doing the same. Give parents the diagnosis. Then give them a copy of the book. Hopefully, they will learn what the rest of us know already: We don’t know know what we’d do without our special-needs kids.

By the way, Jillian Benfield is on Facebook. She welcomes your input.

Thanks for reading. See. Don’t Look.

 

 

 

 

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One thought on “Helping doctors to break the news…gently

  1. I think the book idea is a great one. When our son was born with dwarfism in 1998, we were told, very clinically, at a prenatal appointment ( after a high level ultrasound detected short limbs) that our son had something wrong with him. Possibly Down Syndrome, probably some kind of dwarfism and it could be a fatal type of dwarfism. So go home and prepare yourself for any possibility. So we had about 6 weeks of wondering what could be our future. So frustrating and scary. I certainly hope it’s better now.

    Like

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