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The Question I Didn’t Ask My Doctor About Down Syndrome

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“Why didn’t I say this? How could I let him say that to me? I should have told him…”

We have all had those moments where we wish we could turn back the hands of time and redo a situation with newfound knowledge and confidence. In the Down syndrome community, I have read time and time again, how those of us that received a prenatal diagnosis wish we could go back and change the way we reacted at that moment.

For many of us, the news that our unborn child would have DS was delivered in a very negative fashion. When my husband and I met with our high risk specialist, he came in with a spiral notebook, never even introducing himself, immediately sat down, said “the results show 99% that it has Down syndrome” and started writing out in Roman numerals all of the things he predicted would be wrong with our baby. He used medical terminology that sounded beyond frightening to already emotional parents, such as tricuspid valve regurgitation, then looked up from the spiral notebook and said, “If you want, we can do an amniocentesis to confirm what we already know. Some parents want to do that before they terminate.”

Luckily for us, my OB had already called me before my visit with the specialist and had broken the news in a slightly better fashion. So we already knew our baby most likely had DS before even meeting with the specialist and we were able to immediately tell him that we would not be terminating anything and not to bring it up again. But I wondered how many mothers went through his office without knowing beforehand and that was their very first moment of finding out their baby would have Down syndrome. My heart ached for them.

I have read many beautifully written letters dedicated to “those” doctors, the ones that just immediately offer condolences and the “solution” of termination to an expecting mother. I’ve also sadly known that even some of the most heartfelt, poignant letters I’ve read would still not even faze someone as callous as our doctor.

So I have pondered many times knowing that there was no way to plea to his humanity, if I could go back to that moment, what would I say? Although I never could come up with that perfect comeback that I would love to have given him, I did keep going back to a question I wish I would have asked him.

Why Down syndrome?

That would be my question. What in particular makes their lives less valuable? I understand that a person with DS is more likely to have some additional health problems (which by the way, you were wrong on every single one of your Roman numerals), and may require some therapies in order to accomplish certain tasks. However, if the reason doctors advocate for termination of pregnancies with Down syndrome is because of known health issues associated with it, why would you stop at DS?

If a pregnant couple came in and both individual’s family history had addiction and mental illness, would you immediately recommend they terminate their pregnancy simply because their baby has a higher likelihood of also experiencing these conditions and may be in rehabilitation centers or mental health hospitals as they get older?

If a pregnant couple came in who were both overweight and had family histories of obesity, would you recommend they terminate their pregnancy simply because their child has a higher likelihood of also being overweight and therefore could have additional health problems such as heart disease? I would hope not for either case!

If there were prenatal testing for type 1 diabetes, would doctors encourage those parents to terminate as well so they wouldn’t have the hassle of dealing with insulin, a pump, and worrying about their diet all the time? I would hope not.

So why would you immediately recommend termination simply because there is a higher likelihood that our babies with Down syndrome may have some health problems? Why wouldn’t you just let us know there is a higher chance of that happening?

I am thankful that we were able to determine Down syndrome with a prenatal test. It gave me the time I needed to grieve and then adjust and start researching before my little guy got here. But it also seems to be a double-edged sword.

It’s true, having a child with Down syndrome in many cases does mean that you are going to have more appointments to keep for a while. However, I can also tell you that my “typical” baby was 10 times more exhausting than my “extra” baby.

I do not know of any living human that is perfect. We all have some type of flaw. Why do we allow doctors to persuade us on which “flaws” are worthy of life and which are not? I am so thankful every morning that I wake up, go into my nursery, pick up my beautiful baby boy, and realize that at least I knew the answer when the doctor didn’t to:

Why Down syndrome?

Originally published: December 23, 2020
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