Telling Parents Their Unborn Child has Down Syndrome

Rick Smith, the father of a two year old son with Down Syndrome, who blogs about him as “Noah’s Dad,” has published an open letter on his blog entitled:

To Every OB/GYN On The Planet: How To Deliver A Down Syndrome Diagnosis,The Right Way.

It is a thoughtful and powerful message, delivered patiently and with love.   Since I have written about Down Syndrome before, I wanted to share this with everyone.   Getting the news about your child, whether in utero or after he/she is born can be very hard, and the doctor can make all the difference.  In our case the news came hard because our OB/GYN’s partner ordered a post-natal genetic screening without telling us, so when my wife went in for a well-baby visit she (the OB/GYN) told her the results thinking we knew her partner was concerned.

At the time we heard horror stories from other parents about doctors saying all sorts of incorrect and hurtful things; or doctors who punted and made the nurse on duty tell the parents.    More recently, a priest friend told about a seminarian who was working in the chaplain’s office at the local hospital.  He got a call asking him to accompany a doctor to see a patient.  Without warning him beforehand, the doctor broke the news to the parents, turned to the seminarian and said, “He’s here to help you with your grief,” and walked out.  So this letter needs to be read by nurses, priests, deacons and anyone who does hospital ministry as well.

Here are Mr. Smith’s five key points:

  1. Say Congratulations, not I’m Sorry.
  2. Keep a positive (professional) demeanor.
  3. Tell them there has never been a better time in the history of the world for a child to be born with Down Syndrome.
  4. Let them know you’d be happy to connect them with another family raising a child with Down Syndrome who can answer their questions and give them a window into what life is like raising a child with Down Syndrome.
  5.  

    Don’t Suggest That The Parents “Terminate The Pregnancy” Because The Child Has Down Syndrome.

Since 92% of children diagnosed in the womb with Down Syndrome are aborted, I want to reinforce his last point by quoting him at length:

I can’t tell you how many times I’ve been told by another parent of a child with Down syndrome that their Doctor continually suggested (to the point that they felt pressured) that they “terminate their pregnancy.” This suggestion goes against the Hippocratic Oath which you swore to abide to. It ‘s not a wise use of your power and influence, and does not serve the highest interest of your patients; either the baby in the womb who is your patient and whom you are suggesting to their parents that they murder (abort / terminate) him or her, or the mother who is also your patient whom you are suggesting murder their child and live with the guilt and regret of their choice for the rest of their life.

As I’ve already mentioned, as a Doctor you have a tremendous amount of influence with your patients, and they are looking to you with trust for guidance, hope, and encouragement. Regardless of what your views are on abortion, and rather or not you are “pro-life” or “pro-choice,‘ (I’m fully, 100%, always for life by the way) I’m sure we can agree on the fact that selectively aborting a child based solely on the fact that they have three copies of their 21st chromosome as opposed to two is wrong. In fact, some states have even made it illegal to abort a child due to a genetic abnormality.

So please don’t plant the seed of abortion in your patients mind simply because there’s a chance their child is going to be born with Down syndrome. Instead, plant seeds of hope, encouragement…and life.

The only thing I can add is a picture of my son Nicolas taken at his new training site:  doing filing and data entry for a state agency, a future we simply could not imagine as we held him in our arms 21 years ago.

 

Nico-at-work

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  • http://bodycrimes.wordpress.com bodycrimes

    I agree with you about this and think doctors are possibly imposing their own views/morality when they’re so negative. On the other hand, what should parents of Down’s Syndrome be told about the potential ill health of their child and the impact on their family? I know people with Down’s Syndrome kids and one of the nightmares that hangs over them is what’s going to happen to the adult Down’s Syndrome child when the parents are dead or no longer able to care for them. They are genuinely frightened about state care and the potential for abuse.

    Down’s Syndrome children are often depicted as unusually sunny and happy children, and the Down’s Syndrome people I’ve come across have fit the stereotype. They are deeply loved. But there is a range of disability and health issues and some Down’s Syndrome kids can be very, very sick and disabled. This, surely, is also something a doctor is obliged to discuss.

    • David Cruz-Uribe, SFO

      As my son turns 21 (December!) we are dealing with all of these issues of adult care and support. They are real and are serious. As for health concerns, these are also real and can be very serious. However, they run the gamut and you cannot predict from a prenatal test, or even from a careful examination at birth, whether most of them are going to be problems or not. (There are a couple exceptions, such as malformed heart valves and blocked esophagi, that manifest immediately.) And yes, a good doctor will talk to the parents about all of them. But a doctor should not lead the conversation off with this, or even bring it up early, any more than you would start a well-baby visit by stating, “you do understand, don’t you, that your child is going to die in 70-90 years.” The key point is that a child with Down Syndrome is, before anything else, a child. Start from there and then move on to questions about cognitive abilities and health issues once the parents have gotten their heads around the fact that their child has a chromosomal abnormality.

  • Ronald King

    I always knew there was something special about you. Now I can see.

    • David Cruz-Uribe, SFO

      No, seriously, I am just a Dad. Like all dads, I got thrown head first into the deep end. In my case, it was a little deeper than expected, and bit further from shore.

  • http://paxchristiswfl.blogspot.com Dave Montrose

    Another good point that I would bring is that people with Down syndrome are so often unabashedly happy. Since they don’t have the same intellectual ability as you and I, they don’t have the same worries. Sometimes I envy that. I have never heard parents of Down syndrome kids who wished that they had aborted.

    • David Cruz-Uribe, SFO

      The stereotype of kids with Down Syndrome as “unabashedly happy” is pervasive, and to a large degree has been embraced by the people in the DS community as well. And I must admit that there are times when I envy my son, who for the most part lives in a perpetual now that is full of wonder and is often quite joyful, a joy that is contagious.

      On the other hand, like any stereotype it conflates and obscures the full reality of folks with Down Syndrome. My son experiences the full range of human emotions: anger, sadness, bitterness, regret. Just this week he was sharing in his circle group how much he missed a kid he knew in high school, and was moved to tears. He can also be stubborn, willful, mean, and unthinking. In other words, he is fully human, and shares in the sin of Adam and our fallen state just as much as we do.

  • Jordan

    I have a brother who is developmentally disabled but not Down. Many of his friends growing up are Down, and the characterization (stereotype?) that people with Down syndrome are, as bodycrimes puts it, “sunny and happy”, is the impression I had of my Down contemporaries when growing up. I do agree with David, however, that it’s not wise to characterize Down people as preternaturally joyful and endlessly self-giving, even if many Down people exhibit these excellent attributes in their lives. I know from my brother’s life that it’s often difficult for developmentally disabled people in general to express frustration calmly. This can be a trial for families, as physical violence often takes the place of the ability of differently abled people to reasonably discuss difficulties and emotions. This can place a strain of an entire family, including parents as well as non-developmentally-disabled siblings.

    The older Hippocratic Oath forbids abortion outright. Indeed, even many religions such as Judaism which generally permit a much more varied view of abortion than Catholicism have arrived at a general prohibition of abortion because of fetal genetic “abnormality”. Many more persons potentially agree with a prohibition of the abortion of an Down unborn baby than agree with the moral licety of abortion-on-demand.

    Still, this potential moral common ground dissolves, as Rick Smith notes, in the view many people have of a doctor as omnipotens deus. Instead it’s likely that a doctor has a number of thoughts going through his or her head when he or she realizes that an unborn child has Down. “Will I be sued if the labor is difficult?” “What are potential my legal responsibilities, period?” “Is this couple mature enough to raise a developmentally disabled child?” Not one of these concerns trumps the absolute moral imperative to preserve life, regardless of any costs or liabilities. Why should a doctor presume that a couple cannot raise a developmentally disabled child? No, he or she cannot make that presumption. Sadly, many doctors do. Thus the absolute crime that >90% of Down unborn children are aborted — simply because a doctor holds the mere prejudice that a Down child is “difficult” or “costly” to raise.

    • David Cruz-Uribe, SFO

      ” I know from my brother’s life that it’s often difficult for developmentally disabled people in general to express frustration calmly. This can be a trial for families, as physical violence often takes the place of the ability of differently abled people to reasonably discuss difficulties and emotions.”

      Thanks for this very insightful observation, Jordan. Much of the social development work done with my son is precisely to help he verbalize his feelings so that others can understand what he is thinking and responding to with his actions.

  • Chris Sullivan

    Thanks David for a very helpful and practical post.

    I particularly agree with point 3 “tell them there has never been a better time in the history of the world for a child to be born with Down Syndrome.”

    There is a lot of help and support available.

    Sure, raising a Downs child will sometimes be tough, but the same can be said of marriage, of raising kids in general, and indeed of any aspect of life. We should never let fear of the future stop us from delighting in the gift of new life.

    Faith is not so much about never having hardship or suffering, but of finding the God who is always present to use in our suffering and unites his own suffering with ours.

    God Bless