Disclaimer: I’m not a working journalist any more and I did not have any kind of recording device during this discussion. The quotes are what I remember about the conversation I had with my doctor, they are not exact.
My husband has a gift. He can’t remember bad things that happen. So, if I ever try to pull the wife card and bring up an old fight…he has little to no memory of it ever taking place. Lucky guy, right?! I wrote earlier how I on the other hand, remember every little detail when something goes wrong…until recently.
I thought I remembered each horrible minute inside the doctor’s office the day he read us the Harmony results. I remember feeling numb as I waited on top of the exam table with that crinkle paper underneath my legs. I had already experienced the ton of bricks part of that experience; the shock, the tears, the screaming—and so we sat in silence as we waited to get the official word. But part of that office visit was so terrible that I blocked it out for weeks. It was my mom who actually reminded me of the horrible thing my doctor said to us.
Our conversation went something like this: He said, “It’s this time when people normally want to talk about their options.” I said, “What are the options?” He continued, “Option 1 is you terminate the pregnancy.”
Let me stop right here. This is not the terrible thing he said. No matter what my beliefs are on the issue, I think it was his job as a physician to give us this option.
He went on to tell me that since I was 22 weeks I would need to let him know immediately if we wanted to end the pregnancy as time was running out. I asked him “What’s option 2?” He said, “Option 2 is you continue the pregnancy with a high risk doctor.” It was at this point we started asking him more specifics about Down syndrome, we wanted to know what to expect for our child’s short and long- term future.
He told us long term he may never be able to feed himself or the best we could expect was that he could flip burgers at a fast-food chain. This is simply not true. With advances in medical care and therapies, young adults with Down syndrome are able to attend college these days. According to the National Down Syndrome Society there are 108 colleges with programs for young adults with disabilities. Although concerning that this doctor had little to no knowledge on recent advancements in the quality of life of people who have DS, this is also not the horrible thing he said to us.
He went on, “More immediately, you have a higher chance of miscarrying or stillbirth with Down syndrome and your baby has a 50% chance of having a heart defect.” I stopped him, “Wait, there’s a chance I could miscarry this late?” “Oh, yes, you have a much higher chance of miscarrying,” he said it in a reassuring tone…as if this is what I wanted to hear. This still is not the terrible thing he said to us.
“If you decide to continue the pregnancy, you don’t have to be a hero. You can have the baby here. We can keep the baby comfortable, but you don’t have to do anything drastic like open-heart surgery.” There it is. My son. Apparently he should expect the same access to medical care as a family pet. There is no neonatal care unit in Alamogordo, much less any tertiary care that he may require. We could choose to keep him comfortable, warm, but let him die because his life would not be one worth saving.
I decided to write this post because unfortunately this kind of reaction from doctors seems to be pretty common. Through support groups and research I’ve found that many OBGYNs paint a bleak picture for the future of children with Down syndrome despite recent medical and social advances.
Here’s what I find so problematic with how my doctor delivered the news to us. More people are having non-invasive prenatal screenings done (NIPS) like the Harmony test we had. I asked our doctor if we should get an amniocentesis to confirm the results and his response was “ These tests (NIPS) are so accurate that most doctors won’t perform an amnio if you have a positive result.” Therefore, he gave us terminating the pregnancy as option 1 without a diagnosis of an amniocentesis. Some studies have found that NIPS are not as accurate the makers would lead you to believe, one study found they only have about a 50% accuracy rate for younger women. A recent “sting” had two women who were not pregnant take the different NIPS tests, 3 out of the 5 tests said the women were having baby girls who did not have Down syndrome. Clearly, the 99% accuracy rate the tests boast seems skewed.
Here’s another reason why I find our experience to be so concerning. 1 out of every 691 babies born are born with Down syndrome. Take into consideration how many more people would have Down syndrome if it weren’t for the high termination rate. I’ve read it’s somewhere between 75%-90% for women given a prenatal diagnosis. My point is: Down syndrome is not uncommon. It is the most common genetic disorder out there. Although I wouldn’t expect an OBGYN to know as much about DS as a high-risk OBGYN or a pediatrician, they should know more than my doctor did. They are the ones delivering the news to moms and dads, they should be educated on recent advancements. If they did, I think they would find that a life with Down syndrome is still a life worth living.
So if my former doctor is reading this, I’d like to point him to some proof of that.
Here’s a list of businesses whose owners have DS: http://yomammamamma.blogspot.com/2009/12/businesses-owned-by-people-with-down.html?m=1
Here are education success stories: http://www.ndss.org/My-Great-Story/Virtual-Storybook/Education/
Here are some stories that will restore your faith in humanity: http://www.hlntv.com/article/2013/08/17/downs-syndrome-success-stories
See how easy that was? A simple google search.
If you are a parent and are unhappy about how your diagnosis experience you can submit your story to the Down Syndrome Diagnosis Network and they will send your doctor materials in hopes of educating them on how to deliver news in a way that is supportive and educational. Visit their website here and like them on Facebook here.
Read more posts about our diagnosis story here.