#NeverAlone

Juliet, on the day she was born

No parent should be alone when they find out their child has Down syndrome. But, right now, too many are.

In our case, we were told our daughter had Down syndrome about 2 minutes after she was born. She was still on the warming table, and a neonatal nurse shouted over her shoulder as she left the delivery room:

Doctor, check the baby. I think she has Down syndrome.

The OB cleared the room and went over the physical characteristics that caused them to believe Juliet had Down syndrome. My wife’s first question was, “what’s her life expectancy?”

Now, please appreciate that.

For most every parent, the birth of their child is described as the happiest moment of their life. And it certainly was for us. But that lasted for all of 2 minutes and then her mom is wondering if the life she just gave birth to will end in a matter of years.

Once we got to our room at the hospital, a pediatrician visited and talked to us about raising a child with Down syndrome. A geneticist woke us up the following morning to explain that more than likely the extra 21st chromosome that is the cause of Down syndrome came from my wife’s egg–nevermind whether that was relevant or appropriate to share at that time. And, then, upon check out, as I was paying the bill, I was handed a printout that was from some plug-and-chug program that read,

[BABY GIRL] has Down syndrome

It proceeded to list only the associated health conditions.

And. That. Was. It.

That was all the information we received. No pictures of children with Down syndrome living in today’s world. Nothing about social supports, inclusive educational settings, or life experiences of individuals with Down syndrome.

Receiving the diagnosis made me feel as though I had been kicked down into a dark hole. A dark hole of ignorance and fear, not knowing what “Down syndrome” was or what it meant for my newborn baby girl. That’s where my wife and I lived for the first three days of our daughter’s life.

Of course, we had the benefit of having this squirming, chubby little baby to hold, to caress, and to remind us we first and foremost had our child to love. Juliet was really the only example of a baby with Down syndrome we had at that time, and in our eyes, she was an example of a beautiful little girl that we loved more than anything else.

But, we had nothing to understand what Down syndrome was. This was before iPads, wifi, and before the internet was ever-present. In hindsight, I’m glad for that, because the websites at that time had a very poor ratio of good to bad, with the bad far outweighing the good had I entered “Down syndrome” into a search engine.

Then, three days after Juliet’s birth, we were visited by Down Syndrome of Louisville’s Executive Director Diana Merzweiler and a parent volunteer, Julie Wright, whose daughter Jill was a few years older than Juliet. It was then that we got our first true information about living a life with Down syndrome. The hospital and medical team gave us a flimsy printout for me to use to climb out of the hole. Diana and Julie reached their hands down and pulled me out.

And, I have been forever grateful.

Unfortunately, our story is not the exception, but the norm.

Parents have long described receiving the diagnosis negatively. A study of moms reported awful stories both pre– and post-natally. A study just last year reported that parents have a negative experience by a ratio of 2.5 to 1–so for every 100 sets of parents who had a positive experience with their health team, there were 250 who had a negative one.

And, here’s the kicker, the medical establishment knows this.

When the standard changed such that all women are now to be offered prenatal testing, a survey was done to see how OBs were complying with the change. It found while almost all had changed their practice and were offering prenatal testing for Down syndrome to all of their patients, only 29% were providing educational materials. So, for every 10 patients receiving a prenatal test result, at best 3 were actually getting information to take home with them. With the increased uptake occurring because of non-invasive prenatal screening, more and more parents are being told before they have a child to hold in their arms.

Sadly, the new standard for delivering a test result, in practice, is to not give parents information.

This is wrong.

And, the National Center for Prenatal & Postnatal Down Syndrome Resources is trying to change it.

The Center (where I serve as the bioethics specialist) has 2,000 copies of its booklet Understanding a Down Syndrome Diagnosis available for each non-invasive prenatal screening laboratory to deliver to their provider networks. These labs know who is receiving a prenatal test result with their new tests. This provides an unprecedented opportunity to ensure parents receiving a prenatal test result for Down syndrome are also receiving the resource identified by the National Society for Genetic Counselors and the American College of Medical Genetics & Genomics and an independent study of expectant mothers as the information to give to these parents.

I know for us, just seeing the beautiful pictures would have made a world of difference. Plus, the photographs of adults would have reassured my wife that her daughter can look forward to a long life.

The National Center is running a campaign entitled “#neveralone” because it believes parents should never be alone and should receive the information recommended by professional statements to accompany a test result.

If you share this belief, I want to invite you to visit this link where you can sign up to show your support for this message: that parents should receive information when they receive a test result for Down syndrome. Also, if, like me, you have a story–a positive or negative one–about receiving the news, I hope you’ll share that at the #neveralone site as well.

We need to change how prenatal testing for Down syndrome is being done. Expectant parents need to receive professionally-recognized resources they can review when they’re able to process the news that their child has Down syndrome. You can help make this change happen.

Sign the statement of support and share your story. Let’s make sure parents finding out their child has Down syndrome are #neveralone.

Postscript: I am very appreciative for the support that has already been shown for this campaign. The campaign’s message is supported by Tim Shriver, the CEO of Special Olympics, and dozens of medical professionals have signed a statement of support–you can review both of these statements at the #neveralone site. Plus, 4,000 copies have already been distributed, and we’re very appreciative of those labs who are distributing the recognized resource. I hope you’ll join and add to the momentum of this campaign.

UPDATE: Cassy Fiano shares her diagnosis story and so does David Perry. Both support the #neveralone campaign. If you have written your own post, please share it in the comments below, tag me in tweet, or e-mail me and I’ll add it here in further updates.