#WDSD14: Introducing the Down Syndrome Diagnosis Network!Posted: March 21, 2014 Filed under: advocacy, disability, Down syndrome | Tags: birth, disability, Down syndrome, early childhood, Prenatal Testing, Trisomy21, World Down Syndrome Day 8 Comments
Empowerment. Agency. Community.
These are words that most parents would not associate with learning that their child has a disability. Yet, those are three words I would use to describe my story.
My third child—we call him the Little Pirate—has Down syndrome. We didn’t get our diagnosis until he was almost three months old.
Our story began during pregnancy. Our homebirth midwife not only respected, but truly understood our choice to forgo prenatal testing. She had a sense of our family’s personality. She asked about our values and beliefs. I don’t believe that abortion should become illegal, yet I didn’t want one myself. For us, the information alone would not outweigh the accompanying worry and uncertainty. Prenatal testing is a complicated calculus and she helped us navigate it with no assumptions, no judgments.
Ultimately, we had an uncomplicated pregnancy and birth. The Little Pirate did not have many of the characteristics associated with the syndrome, and so no one suspected a thing. Things got more difficult after a few weeks, when our son opened his eyes and suddenly, the words Down syndrome rolled like ticker tape across my consciousness.
After just a few days, I already knew in the primal way only a mother can know—my baby had Down syndrome. I remember very clearly, sitting on our couch during a two-hour impromptu visit from our midwife, crying. We would have to submit to a genetic karyotype to confirm that he had Down syndrome. It felt like standing on an open prairie, watching a storm brewing on the horizon, powerless to stop the future from tearing us apart.
Then, our midwife told us that we could decline the karyotype test. There was no immediate medical need; we could wait. This was a revelation to me.
I hear all too often that diagnostic screening and testing are foisted upon patients as a matter of course. In my online support group, I was horrified to learn that many doctors never bother to explain the difference between a prenatal screening and a diagnostic test, let alone why a family would choose to undergo such procedures. Many families who have had birth diagnoses have told me that they were simply told that the doctors suspected Down syndrome, and test results would be ready in a few days. I can’t think of a more powerless way to receive such important news. Diagnoses are sometimes delivered as if a terrible tragedy has befallen a family, causing unnecessary pain.
We ultimately did get an official diagnosis, mainly in order to rule out certain medical issues common in babies with Down syndrome. By then, my husband and I had already begun to accept what a Down syndrome diagnosis could mean. We had the support and information we needed in order to peek down both paths, and understood that our family could be happy with either direction our lives took. It was with that sense of empowerment and agency that we chose to take our infant son to our local children’s hospital and find out, once and for all, how many chromosomes he had.
He had 47 chromosomes. We stood on the open prairie; the storm was coming.
Those early weeks were certainly not carefree. I had a flurry of obsessive research that prematurely aged me. I worried about health issues. I had to examine some very ugly beliefs I had about disability, and that personal growth did not come easy.
Still, the storm that was our son’s diagnosis was the prelude to a period of lush growth in our family. My husband and I stood together, our eyes open. There were some beliefs and assumptions we held that needed to be destroyed. The storm passed and our family was nourished in ways we never could have predicted.
We had weathered the storm on purpose, struggled out into the open, and tasted a deep acceptance that caused us to re-examine what truly mattered in life. Love. Inclusion. Respect.
I believe that with truly family-centered care and real-life support, my experience shouldn’t be unique to those who have made the same choices as we did. Families who find out that their children have Down syndrome prenatally, at birth, or after could experience the same level of empowerment.
I want change. I want to give families a chance for a better story.
The Down Syndrome Diagnosis Network (DSDN) will officially launch on March 21st, World Down Syndrome Day. DSDN is a group of eight mothers who believe that our stories can change. Through our medical feedback program, online community, resources, and local support referrals, a better story can emerge for families with a Down syndrome diagnosis.
Just beautiful, Jisun. I’m going to share it with my moms’ group and Ds organization, as well as our local genetic counsellor. We’ve been looking for something similar for a while now. Thank you.
Thank you for sharing!! It makes me so happy to think that we could fill in the gaps for families who get a diagnosis, some have great support and some really struggle. We really want to level that playing field.
This is fantastic. My husband and I got our three-year-old son’s diagnosis prenatally. It was simultaneously painful and a blessing. We tested our nine-month-old prenatally as well. We crave(d) information. It brings us peace. Our state has a pretty good network for families with loved one who have Ds and we have found a lot of support. I’ve even started my own support group to help others. Does one need to live near you in order to volunteer with the DSDN? I would love to if I can.
I’m so glad to hear that you had a good experience, Amy. No, you absolutely don’t have to live in any one place! We are all over the country. :) If you’d like to get involved, send me an email, I’d love to hear from you! kimchilatkes [at] gmail [dot] com
What a wonderful gift you have for finding the good in difficult situations! I’m so happy that you feel so empowered, but I suspect that you had the power already. I look forward to seeing what your organization will do!
So proud of you mamas for creating something so great! Thank you for letting me have a tiny part in this. I feel like I hit the jackpot with our rockin moms group! XOXO
Thank you, mama! I feel like I hit the jackpot with y’all too. We are lucky for sure, I wish everyone had the kind of love and support that we got. xo