by For the last day of Down syndrome awareness month, I’m going to take us all the way back to the beginning.
Our diagnosis story wasn’t alarming or full of false information, mostly because it was largely over shadowed by AJ’s heart defect.
The pediatrician came in to see us shortly after he was born. I recall thinking that was a little strange since it was late in the evening. With Averie they waited a couple of days. But I shrugged it off as likely having improved in the five years that had passed.
Except that wasn’t it. She listened to AJ, and then calmly let me know that the team had asked her to come in to take a look at AJ as they believed he might have Down syndrome. She asked if we knew anything about Down syndrome, or if we knew anyone who had it.
I don’t recall anything she said being frightening, or scary. In fact she was really neutral in her delivery.
As I’ve spent more time in the Down syndrome community, I’ve learned that by comparison, we were incredibly lucky.
Many parents are given their diagnosis coupled directly with a list of the health and learning related difficulties that their child may (or may not) have. I’m all for being informed, but often there was very rarely any positive information delivered along with it.
People with Down syndrome can absolutely live long, amazing, fulfilling lives. They can make friends and get married. They can live independently and have careers. They can do a whole host of things.
A diagnosis of Down syndrome should NOT be delivered as though it’s merely a death sentence. There are risks, and I do absolutely believe parents should be aware of the things they need to watch for. Risks of heart issues, risks of learning disabilities, risks of Alzheimer’s and autism… by focusing on the negative though, it makes it nearly impossible to see the positive.
A lot of work has been going on in the recent years to provide guidelines on how to best deliver a diagnosis. There are multiple points on it — ranging the “small” things like ensuing that the words “I’m sorry” aren’t the focus of the conversation, to the bigger things such as also conveying positive information and introducing a connection with another family who has a child with Down syndrome. Unfortunately these guidelines have not been fully adopted, and worse yet, many physicians are entirely unknowledgeable or have an outdated understanding of what Down syndrome truly is.
I don’t want this page to turn into a pro-life/pro-choice debate ground, but regardless of your stance, the facts surrounding termination rates for prenatal diagnoses of Down syndrome are alarming.
US: 68% of prenatal diagnoses of Down syndrome result in termination. France: 77%. Denmark: 98%. Iceland: 100% leaving 1-2 babies per year born with Down syndrome in Iceland. These numbers only represent the women who choose to get prenatal testing. It can be argued that the 80-85% of women who do choose to have prenatal testing are at a higher risk of choosing to terminate in the first place, but those numbers are still alarming, no matter what side of the pro-life/choice fence you sit on.
At the end of the day, we have work to do. We need to make sure that families receiving a diagnosis get to hear stories of abundance and love, not just a list of the risks and challenges. We need to ensure that physicians are sharing accurate information. We want to be a resource to those who are walking a similar path, and we definitely don’t want anyone to ever feel like they’re walking this path alone.
