baby-question

Doctors respond to parents of Down syndrome newborns with cruelty and callousness

LifeNews recently published an article by Mark Leach about what happened when his baby was born with Down syndrome. Leach describes how he and his wife felt abandoned by the medical establishment and how the hospital gave them outdated and scant information about Down syndrome.

In response to his experience, and the experiences of many other Down syndrome parents, he has become the bioethics specialist at the National Center for Prenatal & Postnatal Down Syndrome Resources, and works to get positive, life-affirming information into the hands of new Down syndrome parents and those who go through prenatal testing for Down syndrome. Leach says:

Parents have long described receiving the [Down syndrome] diagnosis negatively. A study of moms reported awful stories both pre- and post-natally. A study just last year reported that parents have a negative experience by a ratio of 2.5 to 1–so for every 100 sets of parents who had a positive experience with their health team, there were 250 who had a negative one.

In the book Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America, researcher Rayna Rapp documents three such negative experiences.

One mother, whose child with Down syndrome, Amelia, was four at the time of the interview, related the following:

So they diagnosed Amelia right away, on the delivery table. She was barely out, I barely got a chance to catch my breath or marvel at my first baby when the doctor pours this bad news all over us. “She’s got Down syndrome,” he says to us, very coldly. And after he tells us about blood testing and confirmations and all this stuff, we say to him, “But what does this mean? What should we expect?” And just as coldly he says, “Don’t expect much. Maybe she’ll grow up to be an elevator operator. Don’t expect much.” We clung to each other and cried. (Rapp 263)

h down syndromeThis appalling treatment no doubt added to the confusion and grief that the parents felt over finding out that their baby would face unforeseen challenges in life. If this doctor was so callous towards them after the birth of their baby, one wonders how he would treat his patients who tested positive for a Down syndrome child and were still pregnant.  Would he push them towards abortion?

Another mother spoke about how angry her doctor was when she gave birth to a baby with Down syndrome:

My doctor was so angry with me. He couldn’t believe I didn’t take that test. “How could you let this happen?” He yelled at me. “You’re 40!” But I think something else: even though he’s mentally retarded, he could be a good person… It’s just like finding out you have a new job. You just do it, and you accept it, that’s all there is to it.  (Rapp 263)

Even more heartless was the reaction of a third doctor, to another couple whose baby had Down syndrome:

She was tiny, but she was great, like she was just the cutest thing. And then my husband comes in, and he looked weird and immediately he said, “The baby, something is wrong…” And all I could think of was that she’s blind, I guess that was probably the worst thing I could ever have imagined. But the doctor had just called him and told him that Rose was a Mongoloid. We took a half hour to get it out of him, like he couldn’t finish telling me the story, and then the doctor came in and said, “What your husband just told you is right.” He was, like, very down on the whole thing, very negative. He said, “The only blessing is that they don’t tend to live very long.” So he thought it would be a good thing if our new baby would die. What more can I say? (Rapp 266 – 267)

These responses by doctors show how vitally important the work of the National Center for Prenatal & Postnatal Down Syndrome Resources is. Pro-lifers should support families with children who have Down syndrome or other disabilities, and support organizations that help them.

Source: Rayna Rapp Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America (New York: Routledge, 1999)

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  • MamaBear

    A family in our church reported they experienced a great deal of pressure to abort after a prenatal down syndrome diagnosis. Pressure continued almost to delivery, despite their repeatedly telling the doctors that as Christians, they could not even consider abortion.

  • Basset_Hound

    The wife of a broadcast engineer at one of our conservative talk stations had a Down’s syndrome child. On the air they treated the event as a joyous celebration, and made it clear they were very proud of their daughter.

  • Kaitlin

    When my parents were pregnant with their third child, the doctor said during an ultrasound he firmly believed the baby had down syndrome. He encouraged my parents or consider abortion, or at least opt for an amniocentesis… Which has been proven to cause a miscarriage. My parents were shocked, they preceded to state their pro life beliefs, when the doctor continued to pressure them, they walked out of the office.
    My sister was born completely healthy. She had absolutely no health problems. She is to this day the healthiest child my mother ever had.

  • LeticiaVelasquez

    I was 39 and refused testing so my doctor was surprised and didn’t have the guts to break the news, he had the nurses surround my gurney in the hallway and said coldly, “We regret to inform you you r daughter has symptoms consonant with Down syndrome.” NO chaplain, social worker, counselor or experienced mom was sent up. I was on my own.
    Good thing God had spoken to my heart four months before while I was at Mass. I heard His voice in my heart saying, “You are going to have a child with Down syndrome, I want you to accept this child as a gift from my Hand when you receive ME.” I was on the Communion line. I cried and said “yes Lord, but please help my husband accept her.”
    So I wrote a book of 33 parents’ experiences having a child with special needs. How a crisis was turned into a blessing by God’s love. Its called “A Special Mother is Born” and it is available in Spanish as “Ha Nacido Una Madre Especial.”

  • stiffkittenbabelfish

    What a bunch of twats!

  • Amy

    I am the youngest of five kids, and for all except my older sister, doctors suggested abortion for us. My parents, thankfully, never considered that.

    My mom was 43 when she was pregnant with me. Doctors did some preliminary testing on me without my parents’ request or permission to see if I had a chance of being a Down Syndrome baby (apparently, Down Syndrome gets more common the older the mother is during pregnancy…?) They concluded I had a high chance of having the extra chromosome and wanted my parents to get further testing to see if I should be aborted, and my parents said no to both the testing and abortion. I do not have Down Syndrome and am going into my second year of college and am a no-exceptions pro-lifer.

    But how horrible of the doctors to try so hard to prove that I had a high chance of being a Downs baby! My mother spent the rest of her time being pregnant with me coming to terms with the fact that I might not be able to do the same things her other kids could, that I might not get married one day, etc. All for nothing!

    And there was a family at my church that received a similar diagnosis to mine. The doctors told the parents their child had a genetic disease that would dramatically reduce the child’s lifespan/quality of life, and that they should abort. They said no, and after the child was born (I can’t remember if the kid had any problems at all), the family got billed for an abortion appointment the doctor made for them that they repeatedly said they didn’t want.

    • Dominic Huber

      About one in sixty, but hey I’ve worked with a guy who had that disorder and his hard work and longevity as a bagger earned him a job as a cart manager.

  • Beverly Harlton

    As the sibling of a person with Down’s, all I can say is what the hell is wrong with some people?? Oh, the pro-“choice” crowd just loves to say that men aren’t allowed an opinion on abortion because they lack uteruses, yet these slimy excuses for doctors who have never even MET a person with Down’s are allowed to prod parents into making life-or-death decisions for their babies who *might* have Down’s and to wave their ignorance around, casting doom and gloom about on what should be the happiest day of a parent’s life!

    For anyone on the fence, let me tell you something about people with Down’s Syndrome. They’re people just like you and me! So what if they’re not as intelligent? My sister has better grammar than a lot of grown, neurotypical people! (And for the record, she is not extremely high-functioning. She was classified as mild-moderate in school, and she is 24.) I know plenty of people who are nowhere near her level academically, and they’re considered “normal!” (Of course, a lot of them are from impoverished areas, and we know the pro-“choice” crowd doesn’t want too many of those “human weeds” running around, either.)

    Let’s try an analogy. You’ve won a car, and you’ve got the impression that it’s a Corvette or one of those fast and flashy cars that men going through midlife crises fancy so much. After all, everyone else who’s won the contest before got a flashy, sporty car. Why wouldn’t you? But you don’t get a sport car. It’s not fast. It’s not flashy. Turns out it’s a Beetle. An OLD Beetle. And it’s kind of a boring brown colour. Maybe you’re not thrilled, but it’s a car, and it runs. And it’s yours now. The car starts to grow on you after a while. It’s cuter than a flashy car (and kids with Down’s are ridiculously cute; when I was little, I assumed that I was just some hideous troll and my sister was the great beauty, quite the opposite of what a pro-“choicer” might have thought [because I actually was pretty cute when I was little, too ;) ] ). The upholstery is a surprising hot pink, and it turns out there’s all this cool stuff in the trunk! It’s got a surprising amount of pick-up, too, which you never would have expected.

    Maybe it’s not the best analogy since I have zero interest in cars, but it’s better than anything else I could come up with, given my rather esoteric interests. The real point is that we’re all human beings, and it’s completely asinine and immoral for us to make judgement calls on who lives and who dies based on preconceived notions and outdated science.

    • Thomas

      “So what if they’re not as intelligent?”

      They are! – only at the developmental level the disability allows them to achieve.

      IQ by itself is not a determinant of adaptive functioning anyway. How many pro-aborts with high IQs still drag the SCOTUS through the mud since the buffer zone and contraceptive rulings. I rest my case :)

      • Beverly Harlton

        Right on, Thomas! That’s pretty much what I was trying to say at the “cool stuff in the trunk” part of my terrible car analogy. There are many different kinds of intelligences, and you might be surprised at what a person’s talents might be! My sister, for example, has had an excellent sense of direction since she was a toddler, and she’s more tech-savvy than our mother. ;)

  • Dominic Huber

    I have a disorder myself. I have a form of autism called Asperger Syndrome. I love people with Down’s and they are great workers. Depending on their dreams, I’ve seen plenty of them reach new heights. So what if they have an extra chromosome. They are human beings and deserve respect and love.

  • Dominic Huber

    So did Schnucks, before he resigned and moved back to Florida, my teammate, Tyler, was our cart manager for several years. He and I both had disorders. His was Downs and mine was a form of autism called Asperger Syndrome.