Imagine you are a young pregnant mother. You get all the screenings recommended by your OB/GYN, and one comes back with raised odds that your baby will have Down syndrome. You are scared. You ask your doctor for more information. She tells you there is a good chance your baby won’t survive, or if he does, he very likely could be unresponsive, incapable of learning, and suffer debilitating illnesses and physical challenges.
Next you see a genetic counselor. She tells you that the people you see with Down syndrome “out and about” represent only 10% of people with Down syndrome. She asks you to think about future–who would care for him when you are gone? Could you put that burden on your children?
You go home and are faced with the toughest decision of your life. You try doing some research, but don’t know what to believe. Your doctor knows best, right? You decide that even though you love your baby with all your heart, it would be the best decision to let him go, to free him of a life with such terrible quality. You terminate the pregnancy. You decide to live with the heartache for the rest of your life so that he will never have to suffer.
The above was a compilation of real stories from the Babycenter.com “Termination for Medical Reasons” message board. The two impressions I have from reading the posts are 1) too many people are making decisions based on misinformation, and 2) women who terminate are walking around with intense grief and sadness that they feel they must hold in secret for fear of being chastised.
I’m not okay with either one.
These parents had to make the ultimate choice, and they did what they believed would be best for their babies. Their grief is raw, they have doubts, they second-guess their decision. The most heartbreaking aspect is that the pain they live with is also completely preventable.
The issue goes much deeper than any pro-choice/pro-life debate, because these babies were WANTED. Every single comment I read was from someone who tried to get pregnant, wanted their baby, and changed their mind after they got a diagnosis of (or some just increased odds for) Down syndrome (T21). They did some research, listened to their doctor and genetics counselor, and then decided the best course would be to terminate. Were they happy with their decisions? Not one of them.
I will start by acknowledging that for the foreseeable future, abortion is not going to be outlawed. That’s aiming a little high. However, we don’t need to start by changing the laws; first we need to change the language.
In every pregnancy, you go into the doctor’s office and have a sit-down with the nurse to go over your medications, your health history… in typical pregnancies why do none of the medical professionals start the conversation like this?
So, you’re having a baby! You know it’s going to be a lot of hard work, right? And there are so many unknowns, so many things that could happen. Your baby could lose oxygen at birth and have brain damage. You need to be prepared for that possibility. There are things doctors won’t see on the ultrasound, big health problems that could appear at birth or even creep up on your child later. Consider that your baby could grow up normally but later get hit by a car or otherwise injured and you would have to find a person to take care of your child for the rest of their life. Just think about all the uncertainty, and try to decide if you really want to have this baby. If you decide not to, there are plenty of options.
If this is not the conversation in a typical pregnancy, why does it become the conversation when there is a prenatal indication of Down syndrome?
I admit my life is not as easy with a four and a half year old with Down syndrome as it would be with a typical kid of the same age. Is it as rewarding? MORE. Is it as meaningful? MORE. Will my son have a good life and be happy? ABSOLUTELY.
The repeated theme in the parents’ reasons for terminating above is that “the kids with DS that you see ‘out and about’ are not the majority.” Even that a push for government funding is behind the “rosy picture” of Down syndrome. And that more likely, if their babies had been born, they would have been in the majority of kids with Down syndrome who “die young (usually before age 30) or are so severely handicapped that they are permanently institutionalized or in permanent home care.”
INCORRECT. ON ALL COUNTS.
My son is in the majority. Kyle can walk, knows a few hundred words, knows his letters and numbers, sits at the table and eats nicely, and will go to kindergarten next year with the rest of his peers. When I read about other kids on Down syndrome message boards, sometimes I even get jealous because their kids seem to be doing so much more than Kyle. In fact, every person with Down syndrome that I know personally and know through internet groups is doing just as “well” as Kyle.
Full picture: Kyle is cognitively about 26 months, roughly half his age. That means his body is growing about twice as fast as his brain. Does it mean he has no skills better than a two-year old? No–he has plenty of skills scattered across developmental levels. Does it mean he will forever be stuck with a 2-year-old’s brain? Absolutely not. His brain continues to grow and develop just like the rest of his body. It just takes longer.
Kyle is not potty trained. Kyle just moved out of a crib (and did beautifully with the transition). Kyle has challenging behaviors like throwing toys and food, though these are lessening as he learns new appropriate behaviors every day. He is capable of learning and will develop new skills as he grows, just more slowly than other kids.
Kyle has had two surgeries: a clubfoot tendon transfer (not related to DS) and a tonsillectomy/adenoidectomy (common surgery for kids with and without DS). He has a tiny heart defect, bicuspid aortic valve, that has never caused a single issue and probably won’t until he is middle aged. He has no surgeries on the horizon, and like my other children, I pray it stays that way.
Kyle takes a thyroid pill every day and probably always will. I hide it in his pudding. Kyle also wears glasses, at least when he isn’t throwing them off. He has low muscle tone, which means he needs physical therapy once every week or two to help him develop his trunk muscles. He doesn’t run or jump yet, but he has one heck of a throwing arm.
That’s it. All the scary possible health conditions and complications, and that’s all Kyle has. He does not have a “mild case” of Down syndrome. He is not “high functioning.” He is not part of a small minority.
Kyle is an average kid with Down syndrome.
Here are some other completely typical, average people with Down syndrome:
Maybe consider that the information provided by medical professionals is out of date.
The new generation of kids with Down syndrome is the new normal, the new majority. Unfortunately, the people at the front lines don’t seem to know it yet.
In fact, people with Down syndrome have scarcely been given a chance in recent history. First they were institutionalized, just as they are still in many countries. But in the U.S., when parents began questioning that practice in the 60s and 70s and insisted on bringing their babies home and insisted that they should be able to go to school, the laws started to change. This could have made an incredible difference for new babies born with Down syndrome, but the new realization came at the same time as two strikes against Down syndrome: Roe vs. Wade and prenatal testing.
Laws aren’t going to change–got it. Acknowledged. Not going to change anyone’s mind on abortion. Check.
So how about this? Remove abortion from the conversation. Just like when a woman gets pregnant and nobody goes around telling her she has “options” because guess what? She knows that. And if she has a positive screen for Down syndrome, she still knows that. Nobody needs to spell it out for her.
But by including talk of abortion with a Down syndrome diagnosis, medical professionals are forcing parents into a corner. They are forcing parents to make a decision they might not even have considered. They are planting ideas of a horrible, suffering, painful existence that could be prevented with one life-changing decision.
And this is the aftermath: