Someone I love just got a prenatal Down syndrome diagnosis, what can I do help them?
I put this Q&A together based on questions I received from some friends who were brave enough to ask. I like talking about Down syndrome, I don’t want people whispering about it or acting like it’s taboo or off limits, so if you have questions, I really encourage you to ask me, I’m happy to talk about our experience.
What do I say to my friend?
Anything. You can’t say the right thing right now, because the right thing doesn’t exist. That’s not your fault. Your friend’s world just got thrown off kilter, they need time to adjust. They are figuring things out. Give them space and time if they need it, but they may not want space either; follow their lead. The amount of supportive love and messages we got in the early days was maddening, but looking back now all I remember is how much people flooded us with love.
Don’t blame them for having lots of conflicting feelings and emotions. Don’t turn their child into a mascot for your pro life politics. Don’t say you’re sorry. Don’t pity them.
Do tell them you love them, and that you’re excited to meet their baby. If they have older children and you are able, offer to babysit. They are about to have a lot more doctors appointments.
People came out of the woodwork to tell us stories of a kid with Ds they met at the park, or their cousin’s aunt’s neighbor who was the sweetest man ever. They sent me email addresses and phone numbers of strangers they expected us to call because they also have children with Ds. I’ve been flooded with recommendations for blogs and people have sent me the same YouTube video a hundred times. It’s annoying. But also? It’s amazing. We are so lucky so many people love us and care enough to reach out, recommend and hit send. Don’t stop, we love you too.
But what do I say? What words do I use?
It should go without saying that the R-Word is off limits. But you might not know not to call their child a “Down’s baby”. Their child is a beautiful tiny human who happens to have an extra chromosome. He has Down syndrome, he isn’t Down syndrome. Use people first language, please; for example, Copley is a baby with Down syndrome.
Will their baby look like them?
Of course he’ll look like them! He’s made of their DNA! I admit, I was a little worried about that too when I was pregnant, as silly as it seems now. We have a doctor who asks us at every visit if we are sure he has Down syndrome, “because he doesn’t look like he has Down syndrome”. Come on, Doc! Of course he looks like he has Down syndrome (I say “looks like he has Down syndrome” not “downsy” which I’ve heard, cringe), in so much as anybody can look like they have Down syndrome. That is, he does exhibit certain characteristics associated with Down syndrome, but that doesn’t mean he looks like every other person who has Down syndrome, or that he’s not the cutest damn baby in the whole world who, incidentally, looks just like his mama.
Does it have degrees? Is it possible to have mild Down syndrome?
Their baby will have an extra chromosome in every cell in his body, that’s how Ds works. A friend shared an analogy with me once, and it was so simple and brilliant.
Down syndrome isn’t a spectrum is disorder, it is a syndrome where people with Ds share in a set of characteristics, each of varying degrees.
Think of Ds like a salad bar. It’s not a perfect analogy but it simplifies the point.
The salad bar contains all of the characteristics of Ds. As you watch people go through the salad bar, no one gets every item on the salad bar. Some get several things and some just grab a couple. Some get heart issues, GI problems, hearing problems, sandal gap toes, Palmer creases, small ears, etc. but not everyone gets the same amount of any one item.
Everyone gets lettuce though. You can think of lettuce as intellectual disability. Some people get more lettuce than others but everyone gets some of it.
And almost everyone gets salad dressing. Dressing is the hypotonia or low muscle tone. Some just get a little and drizzle it on the side of their plate, like someone with Ds might have mild hypotonia in their arms, or some might gets lots of thick dressing, like some people with Ds have hypotonia throughout their body, including the organs and digestive system causing their digestive system to move slowly.
In the end, you may find a few salads that are similar to each other but ultimately no two salads will be alike. People with Down syndrome have characteristics in common but each has their own unique combination of those characteristics.
I’m worried about their baby. Some of those “characteristics” sound like pretty serious health issues.
They might have some pretty serious health challenges, Or they might have a totally healthy baby. Some of us get so lucky, but some of us are given babies with broken hearts. It’s not fair.