The period following Emersyn’s diagnosis, Baker wrote, was the most difficult time of her life. Yet her doctor offered none of the support and encouragement that Baker desperately needed: “I told you her name, and you asked us again if we understood how low our quality of life would be with a child with Down syndrome. You suggested we reconsider our decision to continue the pregnancy.”
Baker says her letter was intended to let the doctor know he was wrong. Emersyn hasn’t ruined the Baker family’s quality of life — quite the contrary. “She’s given us a purpose and a joy that is impossible to express,” says Baker. Emersyn was — and is — perfect.
My ten-year old daughter Magdalena has Down syndrome. Many of my social-media friends hailed Baker for drawing attention to a stubborn trend — the medical community’s tendency to cast a Down-syndrome diagnosis in purely negative terms. “Here are the odds your child will develop leukemia,” they say. “Here are the odds your child will never learn to read.”
Parents and advocates have debated how best to reverse the trend. A big part of the problem is that many of the doctors, nurses, and technicians handling these diagnoses have never met a person with Down syndrome. They can’t view the diagnosis as anything other than the end of the world for a family. Abortion seems like a reasonable step. Maybe even more than reasonable.
In our case, a doctor/administrator at Manhattan’s Lenox Hill Hospital volunteered to help us cross state lines after the legal window for an abortion in New York State closed at 24 weeks of pregnancy. Other medical professionals that we dealt with sought constantly to reaffirm that we knew what we were getting ourselves into. We assured them we did.
“Okay,” they said. “We just have to check.”
Baker’s letter made little Emersyn’s beautiful face famous, but it didn’t sit well with everyone. In the New York Daily News, Hallie Levine, also the mother of a child with Down syndrome, declared that “it absolutely is appropriate for a doctor to present termination as part of counseling any family presented with a Down syndrome diagnosis receives.”
Levine admits that Baker’s doctor tried to bully her into an abortion, but she is less concerned with that than she is with keeping pro-lifers from dominating the conversation about Down syndrome and prenatal testing. She worries that when “anti-choice” parents like Baker post smiling pictures of or happy stories about their kids on Facebook, the world gets the wrong idea about Down syndrome: “When people . . . present kids with Down syndrome as divine little snowflakes, well frankly, it’s condescending and insulting.”
For good measure, Levine added a gratuitous kick: “No, her little Emersyn isn’t perfect.”
Life is risky. Life is dangerous. There’s a lot that can go wrong. Should a doctor list all that stuff out at baby’s first ultrasound?
Amy Tuteur, an obstetrician-gynecologist, also took issue with Baker’s letter. Writing at Time.com, Tuteur said it would be unethical not to discuss possible medical treatments (i.e., abortion) with a pregnant woman carrying a child with Down syndrome — even if, like Baker and my wife, the patient had already said she wasn’t interested in “terminating” her pregnancy.
“Good medical care always requires providing complete and accurate information — not merely the information that a patient wishes to hear,” wrote Tuteur.
That got me thinking: How far should a doctor go when providing “information” about odds-based medical and social outcomes to an expectant mother? Life is risky. Life is dangerous. There’s a lot that can go wrong. Should a doctor list all that stuff out at baby’s first ultrasound?
A 2003 study published in The Lancet found that children who grow up with one parent are at increased risks of psychiatric disease, suicide, and addiction. Maybe physicians like Tuteur should impress on their unmarried pregnant patients the risks to their quality of life should they decide to “continue with the pregnancy.”
According to the National Center for Children in Poverty, 82 percent of children born to parents without a high-school diploma live in low-income families. Maybe physicians like Tuteur should ask whether their pregnant patients made it to graduation. Poverty can be a bummer on your quality of life.
It’s hard to imagine anyone arguing that doctors should have such conversations with their patients. In fact, many would consider it condescending and insulting if they did. When the unborn child has Down syndrome, however, an ethical obligation dictates that every expectant mother understand just how miserable her quality of life could be.
Those aren’t Tuteur’s exact words, of course, but they are implied in her criticism of Baker’s letter.
At the moment, my wife and I have four children. She is due to give birth to Number Five in July. Only with Magdalena was the possibility of “terminating” ever raised by a doctor. Only with Magdalena were we reminded at every visit that we could abort if we wanted to. Only with Magdalena did the medical community’s ethical obligation to give us “complete and accurate information” kick in.
Our children are young, so most of life’s challenges lie well in the future. When bad breaks do present themselves, my wife and I will love and support our children while counseling them that life is indeed risky. There’s a lot that can go wrong.
Still and all, it’s good to be alive.