Down syndrome is not incompatible with life

I’ve talked about how receiving a diagnosis of Down syndrome can be a gut-punch. One that hits you. But, there are other perspectives on a Down syndrome diagnosis.

As covered at the beginning of this post, most describe receiving the diagnosis of Down syndrome as an incredibly painful one–including those who are advocates for individuals with Down syndrome. The post’s author goes by the on-line handle of “Little Bird’s Dad” (LBD) and is a parent to a child with Down syndrome. LBD seeks to take on this description in his post titled, “The Big Myth about Down Syndrome – and how new Dads can shatter it.” 

One of the tips LBD shares is gaining perspective. Last week, I presented at a conference where I had the opportunity to share one physician’s perspective on delivering a Down syndrome diagnosis.

In 2008, I was a presenter at a joint conference in Montreal for the professional obstetric societies for the United States (ACOG), the United Kingdom (RCOG), and Canada (SOGC). I met an obstetrician there who was Pakistani and practiced in England. At this international conference, I learned that obstetrical care is structurally different outside of the United States.

Here, it is the typical situation that the expectant mother meets with her OB at each prenatal visit and then has that OB (or one of her practice members) deliver the baby. In the United Kingdom, however, this OB shared how he did not see probably 80% of his patients. This is because those 80% were cared for by a midwife on his staff. OBs, instead, are specialists reserved for only high risk pregnancies. Perhaps that practice experience is why he responded the way he did when I asked him a question.

I asked him, “What do you tell parents when you have to deliver a Down syndrome diagnosis?” The OB from England just shrugged his shoulders, as if it were no big deal, and said,

I tell them, “your baby has Down syndrome. But this is not incompatible with life. Enjoy your baby.”

Because of his accent (and my American ears), I asked him to repeat what he said, which he did. I then asked, “What do you mean ‘not incompatible with life.'” To which the OB, again shrugging, said:

Well, this is not some other condition where the child is going to die. Down syndrome is not incompatible with life. They live, they grow up. So I tell the family “Congratulations.”

Informed by his experience of delivering many babies who would die from their conditions, this OB’s perspective of Down syndrome was that, comparatively, it was not that big of a deal.

Everyone processes the diagnosis differently and LBD begins by noting that most who write about receiving a diagnosis associate it with being one of shock and emotional turmoil. But, that’s just how some people deal with it.

Like the OB from England that I met in Montreal, LBD has a different take which I think is worth considering and appreciating. Click here to read LBD’s full post. And, regardless, there is some general applicability to the parenting tip LBD links to, helpfully abbreviated as “CTFD.”

What is your perspective on a Down syndrome diagnosis?