The education

My first post of 2015! I had such a blissfully relaxing Christmas break & birthday but now I’m in that early January bummed out stage. No better cure than jumping in and getting back to normal.
I never take my kids to doctors appointments. Honestly, I rarely even bring Jason with me! But, I had a checkup the day after Christmas & we’d already spent so many consecutive days together, it seemed natural the whole family would stay together. So we did! It felt like we had just sat down when I overheard a conversation between mother & daughter next to me. In fairness, they were talking before I sat down & I’m speculating about the specific details but here’s what I heard. The girl, who looked to be in her late 20’s seemed to be around 20 weeks pregnant & was sitting with what I assumed was her mother. They were going over a folder of information. It appeared that the folder contained some test results & the mother was explaining what the results meant. The mother was pretty animated & speaking a bit loudly so it was hard not to hear they were talking about Down syndrome. Of all the days for David to be with me! The snippets that I was picking up included, “Down syndrome, not for sure, amnio & results.” In fairness, none of those are negative words so I shouldn’t have been immediately on guard, but of course I was, especially with my precious son 10 feet from them. Jason & I kept exchanging looks and finally I said, “I’m going to say something to them.” I walked over and said, “Hi! I just wanted to let you know, we had a prenatal diagnosis in this office of Down syndrome with my son over there and I’m happy to talk with you about it if you have any questions.” The girl was very kind and said, “Thank you, this is all very overwhelming.” Her mother, was a little less kind. She immediately started preaching to me about the current research, how only an amnio is 100% but that it causes miscarriages and how blood work isn’t accurate. I was flustered because a) I wasn’t expecting that kind of reaction b) I’m not as educated as I want to be on prenatal genetic testing beyond my own experience and c) she wasn’t kindly asking me questions and trying to get first hand information. She was aggressive and her words had a negative tone. I felt like she was trying to educate me! I explained that we had received a positive diagnosis through my 12 week blood work – big mistake!! She was quick to remind me that there are no positive or negative results for the early genetic tests that are out there. She’s right; there are higher or lower probabilities. But, because these tests are under increasing fire and there’s been some new studies completely debunking their accuracy at all, it seemed she was using those as her touchstone. She kept telling me, “They’re only 40% accurate.” (Seriously, she said it 4 times) The only thing I could respond with was, “Well, it was 100% correct for us.” Again, the pregnant woman was kind & kept telling me how cute David was while her mother asked me if I’d had an amnio and additional follow up questions. I was kicking myself because I was trying to be calm and an advocate for my son and instead I was flustered and stumbling for words. I did have the presence of mind to tell both women that my OB’s office handled our diagnosis wonderfully. The mother almost tried to argue with me about that! She insinuated that the doctors were pressuring her daughter to get the amnio or terminate. I can’t speak for their experience or for every doctor in the practice, but ours was as positive an experience as we could’ve hoped for.
I’m no stranger to the shock and grief that comes with a prenatal diagnosis. And I’m an advocate that everyone should feel and react however they need to. But this experience in the office left me uncomfortable. I felt so bad for the pregnant woman who was being, it appeared, negatively impacted by emotional information. The ironic part is my OB’s office has my business cards in their lobby since I work with clients and their reproductive mental health. My business cards were literally within grabbing distance! Why didn’t I offer to have her contact me? Why didn’t I refer her to the Rocky Mountain Down syndrome Association? Why didn’t I tell her about the Down syndrome Diagnosis Network?
I want to be the calm, bold, knowledgeable mother that makes Down syndrome seems less scary. I want to be a quiet advocate for David. I want our experience to reassure people & not be reduced to stutters if I’m confronted.
Here’s to hoping all three of us women leaned something in the office that day.
Here are great sources of information & education:
http://www.rmdsa.org
http://www.dsdiagnosisnetwork.org