There were three pediatricians in our wedding party. One
bridesmaid. Two groomsmen. So we have a nice list of friends to call whenever
we have a question. I’ve asked them to talk me through the signs of
dehydration, the best way to treat wheezing, the various questions to ask back
when one doctor suspected Penny had leukemia (she didn’t). We’ve discussed
prenatal testing options and the impact of vitamin supplements and a host of
other issues
This past weekend, I was having lunch with one of these
pediatrician friends, and I finally had the chance to answer a question of
hers. She said, “You know, I’ve been practicing for almost six years, but I’ve
never had to give a diagnosis of Down syndrome. Or of anything hard, for that
matter. Do you have any advice for when it does happen?”
Her question brought me back to our own time in the hospital
just after Penny was born–the doctor with sweaty palms who had trouble looking
us in the eye. The nurse who called Peter out of the room. The anxiety and
sadness and fear of it all. The doctors couldn’t have changed the emotions. But
they could have made it easier.
I described our experience, with Peter in a dimly-lit supply
closet surrounded by doctors, Penny being poked and prodded in the nursery, me
lying in the hospital bed wondering why I was suddenly all alone. I said, “The
cardinal rule is that, assuming it’s possible, you tell both parents together
with the child present. And you give the facts that they need to know in the
moment, nothing more.”
We went back and forth to construct a script: “Something
like, ‘I wanted to tell you that we suspect your child has Down syndrome. We
want to help you welcome him/her into the world. Right now, we’ll need to do a
few more tests. We can help get you connected with some other parents who can
support you if you’d like. You have a beautiful child, and together we’re going
to find all the help you need.”
My friend asked me a few more questions about my experience,
even a few questions about Down syndrome. I told her how the life expectancy
has changed dramatically (more than doubled in the past few decades), how I
suspect that early intervention and integrated education will mean more and
more opportunities for kids with Downs to learn and work and live
independently.
And then it hit me that having a script and having all the
correct medical information wasn’t the most important thing after all. “You
know,” I said, as the waiter cleared our dishes, “the thing that matters most
of all is what you, as a doctor, think about having a child with Down syndrome.
a parent. But if you believe that kids with Downs and other disabilities
actually have something to offer… that you’re giving hard news, but not bad
news… that’s really what will make all the difference.”
One final note: Dr. Brian Skotko has recently published two documents, one called “Prenatal Diagnosis of Down Syndrome: How Best to Deliver the News,” and the other “Postnatal Diagnosis of Down Syndrome: How Best to Deliver the News.” Click here to see a list of these and other articles by Dr. Skotko, and please pass along this information to your child’s pediatrician.
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