Every year the Down syndrome community bands together to write open letters to their doctors for what’s known as the “Dear Doctor Campaign.” Why? What’s the point of this?
Even though Down syndrome is now widely accepted, there are still several thousand healthcare professionals who deliver the diagnosis poorly or gasp, mention the A-word. WHAT?! I know. Terrible. But it happens. So every October, or what we recognize as Down syndrome Awareness Month, the #DearDoctor campaign is participated in by thousands.
Don’t get me wrong; Some of these Dear Doctor letters are positive and give the rest of us hope for the future. But because there are still so many that aren’t, this campaign is necessary.
One mom, Ann Poirer, wrote a Dear Doctor open letter but added a twist; She wrote what most Doctors would say while delivering a diagnosis and then rewrote it the way they should actually share the news. She has given us permission to share it here. - Lindsay Robertson
When we had Alice, all of the doctors in the hospital were incredibly negative with us. They told us that she had Down syndrome in a very depressing way. They did not congratulate us. They told us they were sorry. They acted like it was the end of the world for us. I would have given anything in that moment for one sliver of hope... but the doctors didn't give it.
As I've met and talked to so many other moms of kids with Down syndrome, I realize that 99% of them had the same experience. This is wrong, and it needs to stop.
In addition to the doctors being extremely negative about your future once you have a child with Down syndrome, there is also a ton of misinformation out there. A lot of books are outdated and wrong. Information given via pamphlets in the doctors' offices is wrong. I can attest to that. And in general, the idea that doctors have (and give to patients) about Down syndrome is wrong.
So, while the post below is not exactly what the doctors told me when Alice arrived, it's a compilation of ideas they put in my head, ideas they have put in the heads of other DS moms I've now met, as well as (inaccurate) ideas you'll find in books and articles and Google searches about Down syndrome.
The delivery and dialogue needs to change. I'm working on it.
I am so sorry to tell you this, but unfortunately... I suspect that your child has Down syndrome. I know this is supposed to be a happy day and now it is not. Because she has Down syndrome, your child will do some things you envisioned for her, but not others. The things that she does, she will take a long time to learn. She will be very delayed. Your older daughter will miss out on having a typical sibling relationship. Your marriage will suffer because of this added stress. A lot of your time will be spent taking your daughter with Down syndrome to appointments and therapies. She will likely live with you forever. She will be dependent on you for almost everything. She will look different than you and the rest of your family because of all the features associated with Down syndrome. I am so sorry... but you are going to have a life of hardship because of your daughter with Down syndrome.
Oops, doc. I think you meant to say this...
Congratulations! I am so excited to tell you that we think your daughter has Down syndrome. I know this comes as a shock to you, but things will be OK. They will be more than OK. They will be awesome. Your daughter will do everything you envisioned for her. In some things she might be a little delayed, but it's not a big deal. She will always get where she wants to go. Your older daughter is going to learn so much from your new baby with Down syndrome. She will learn compassion, patience and empathy in a way she can only learn this way. Your marriage is going to thrive. The divorce rate is actually much lower in couples who have a child with Down syndrome. You will see your spouse in a whole new light, and you will fall in love all over again. You might have some extra appointments or therapies for your new baby, but they won't be time-consuming or money-consuming like you might have previously thought. And every ounce of "extra" you put into your new baby will make her stronger and keep her right on track with her peers. She will not live with you forever... but by the time she's 18, you'll be so in love with her that you'll be begging her to stay. She might have some features of Down syndrome -- like these beautiful almond-shaped eyes -- but she will look so much like you, your husband and your older daughter too. She is absolutely beautiful. You will experience love like you have never known before. I am so incredibly excited for you... for you are going to have a life of indescribable joy because of your daughter with Down syndrome.
To read more from Ann or to follow her blog, Wonderland Mommy, click on the link below.