Evidence-Based Standard of Care

I was looking at blogs the other day, and came across the link to this webpage, by the mother of a child with Down Syndrome. It’s an excellent perspective, and regardless of your feelings on abortion, you should read it, because it touches on so many different aspects related to pregnancy and birth.

She writes that when her daughter was born with Down Syndrome (I assume she had not had any prenatal testing, because it sounds like her condition was a complete surprise at birth), she and her husband were only give the negative aspects: early death, mental retardation, heart defects, leukemia, Celiac disease, and developmental delays.

Despite the hundreds of thousands of people with Down syndrome in America, even the medical professionals didn’t seem to know much about it.

She goes on to talk about her daughter’s development — normal in many ways (says ‘no’ with gusto, like any other 26-month old), and delayed in other areas (didn’t walk steadily until just a few months ago):

In other words, she has Down syndrome, and she is developing, in many ways, like any other child.

This mother talks about the hurt she feels — as if they are rejecting her child — when they ask about the likelihood of her having another child affected by Down syndrome:

Asking whether I am at risk for having another child with Down syndrome (and statistically speaking, the answer is yes, my “risk” is 1 in 100), is akin to asking whether I am at risk for having another child with brown hair, with gorgeous green eyes, with her father’s hand-eye coordination or her mother’s love for books.

Then she talks about the “standard of care” of obstetricians — that ACOG has suggested new ethical recommendations that, not only should all doctors screen all women for Downs and other conditions, but that if they do not perform abortions, then they should refer the women to someone who does. They phrase it in terms of “personal beliefs deviating from evidence-based standards of care.”

I will grant that performing abortions or refusing to perform abortions is based on one’s personal beliefs; but that it is “deviant” to refuse to perform an abortion? What is the basis of evidence to promote elimination of children with Trisomy 21 (Down syndrome)?

I understand that many women face unbearably difficult choices in regards to the health of their babies. Some choose to terminate pregnancies because they have been given information about the near certainty of physical abnormalities leading to their child’s early death. And yet many women choose to terminate a pregnancy based upon probabilities, fear, and misinformation.

It is this misinformation which is truly the heart of the problem! This mother says that many women are given only the same incomplete information that they were given when their daughter was diagnosed; and as a result some 85% of women who receive such a diagnosis will have an abortion. Yet she writes of the much better outlook that babies born with Down syndrome have now, as opposed to a generation ago.

I also wish that “evidence-based standards of care” included evidence of the potential for children like Penny. I wish it included not only a list of all the medical problems she could face, but also the joy she could bring and the abilities she could have. I wish it included the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on Varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe.

Here is the problem — when people are only told one side of the story, they are lacking the balanced perspective they need to truly make an informed decision. This goes for prenatal testing as well as for every other area in life. I’ll pull a recent example from my own mental cogitations about breech birth. In the past couple of months, I’ve read numerous stories about vaginal breech birth, and all the stories have been positive with happy endings. Except the last one was of a midwife who had never attended a breech birth before, and in the course of a couple of months attended the births of two breech babies who both died during birth. While I still am in favor of vaginal breech birth under certain conditions, these unhappy endings showed most dramatically that not all breech births end well. Neither vaginal breech birth nor C-section is a choice to be made lightly, but to only hear one side of the story is to only hear a half-truth, which in many cases is not “truth” at all. It is true that most breech babies born vaginally do just fine; but not all do. It’s important to get both the risks and benefits, the good and the bad, the pros and the cons of every decision — as well as the likelihood of these things happening. Yes, some children with Down syndrome are very severely affected and even die in infancy because of their condition; but most do not, and the overall prognosis is good. To get only the negative is to get only half the story.

Some people only hear that “there is a possibility that…” — well, one in a million is still a possibility! There is a possibility that the next time you get in a car, you will be involved in a fatal accident. Will that keep you from going grocery shopping? Or does the benefit of not having to walk for several miles with bags of groceries outweigh the slight risk of a car wreck?

So, the moral of the story is, if you are told only the risks or only the benefits of something, seek out “the other side of the story.” Find out for yourself if the risks are really that bad, when compared to the benefits.

One Response

  1. Great article! You are so right!

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