Down Syndrome and the Medical Community: Stop It Already

Rewind back to 9 years ago.  Christmas was over, New Year’s was something I didn’t care about because I was around 37 weeks pregnant with my first baby, a girl. I was so excited, so was Chris.  Despite the fact that I was high risk because I had a blood clotting disorder and had to be monitored closely at the end, my OB had reassured me that other than that and my daily injections, I was just like any other pregnancy so far.  I felt good.

Chris and I had been to genetic counseling but we’d decided not to do any prenatal testing, because we knew this baby was meant to be.  We’d wanted a girl and we’d gotten a girl, and God was good, providing us a nice home near family and good jobs for Chris.  My parents were moving to town, too, so even though Mom had Alzheimer’s, we felt good.

Fast forward a few weeks later.  Amelia had been delivered all happy and healthy an hour and a half into January 12, 2003, following a delayed (and delayed again) induction.  They took her to NICU because her eyes looked funny (“probably just the drugs we gave you Mom!”) and they wanted to do a karotype because of a fold in her eyes.

Even after that long labor, and my anxiety that Amelia was ok, and our desire to take her home, I wasn’t stupid.  Deny it all I want, I knew exactly what a karotype “chromosonal” blood test meant, and I knew deep down that she had Down syndrome. I could not admit it to anyone, and I was crushed, having crazy fantasies about what would happen as she grew, but I kept it to myself.

Three weeks later, they wanted us to come in for the test results, but since we now lived in PA rather than NY, my husband demanded they give the birth results over the phone.  She had Mosaic Down syndrome, whatever that was.  That said, between the stress of the birth, the anxiety of waiting on the results, the soon-after discovery of a heart murmur, plus relocation to an area we greatly disliked, watching Mom spiral into dementia, and a husband who commuted a lot leaving me alone with a baby and no license or subway or friends nearby, I descended into an 8 month bout of depression.

I am bringing this up because I wonder if this could have been avoided.  My perception of a person with Down syndrome had not been good, and despite my OB exhorting me to NOT read anything about adults who had Down syndrome because things had changed so much, I was still full of despair.  I held Amelia while the diagnosis was revealed and it was the first time she cried…because I was weeping. But she was an angel baby, happiest kid I ever met, and the hole in her heart shriveled to nothing. Why had I wasted so much time crying?

So, when I read this blog tonight, I was reminded of it all over again.  Read and come back, it’s worth it.  All done? Did you subscribe too? Great blog.

Anyhow, Noah was born about a year ago, so 8 years after Amelia.  You get this sense, sometimes, as the parent of children with special needs, that big things are happening, things are changing like the stop “R” word campaign, that we are coming full circle and growing intellectually as a society – and then you read a blog post like this.  ONE YEAR AGO and the doctors are acting…well, as Noah’s Dad says, like it’s a funeral at a birth.

I’ve grown an awful lot, because I’ve read the birth of surprise babies with Down syndrome, and it’s always this same story, but it’s never hit me this hard.  Thinking back to my 8 month depression after Amelia’s birth, and all my struggle over the years to parent my girls and try real hard to NOT wish things were otherwise, and I’m brought back to the professionals.

The medical community once again.  Now, I know our medical community in the US is deeply troubled for a number of reasons. I really hate to fault doctors, because I’ve had two – a neurologist and an OB – save my life and work their tails off for me, when my health was in deep risk. These two lovely people were STEEPED in bedside manner and cared for me and for their work in a way I rarely see.  I’ve also seen the other side of the medical community, far too often, and that saddens me.

I wonder – and I wonder what you think too – what would happen if doctors after delivering a child with suspected Down syndrome said this:

“Congratulations, Mr. & Mrs. B, it’s a girl!  Please take a few minutes with your baby, because we believe it’s possible she might have Down syndrome.  Nothing at all to worry about, she’ll be such a joy and a blessing!  We do need to take some extra little precautions with her heart (and x,y,z), but I assure heart defects are very common and we know some wonderful specialists who can take care of, if there is a problem.  There may not be one at all!  Isn’t she beautiful?”

See how easy that was?  Yes, they can and should list any and all medical issues, that’s fine, but not with a somber, death knell mood.  As bad as I felt getting the news via phone, I can only imagine how much worse it would have been if we’d been there.  It makes me shudder!  Would there be a heavy hand of an unknown doctor on my shoulder?  A clinical check list recited what we can not and should not expect?  A hint of sympathy, talk of “there there, it’s alright, we have counselors ready to speak with you if you need”?

Why should the birth of a baby with Down syndrome NOT be a joyous, fulfilling event, like any other baby’s birth?  I’ve said since the beginning of my journey with Amelia that a baby is not a guarantee. Anything can happen at any time, and once that child has left your body they are on their own trajectory that you can only guide for a short time.

Now that I’ve written this, too, I have to check myself and think: what about autism?  Why should it be different?

We parents have to shut up about “difficult children” and take them where they’re at. The world needs to be a place that we embrace diversity in all the ways God created it, “fearfully and wonderfully made.”  If it’s too hard to hear a child speak, cry, laugh loudly, or yell here, there or anywhere, well, too bad! Kids will be kids, and some kids just cannot hear their tone, volume, or perceive how WE perceive it. The world is not just about you – you have to share with a lot of people.

Children are tomorrow’s world and you need to deal with them if you want a future, whether they have autism or not.