To parents considering Down syndrome termination

The effect of medical professionals’ bias means life and death for parents considering Down syndrome termination.

Newly pregnant with my fourth, I sat with the developmental pediatrician discussing my oldest child. As my younger son with Down syndrome squirmed on my lap, I told the doctor my pregnancy news.

Without even desultory congratulations she asked, “You’re getting the [genetic] testing?”

I fumbled through an explanation. “Maybe, I don’t know. I haven’t decided yet.” She looked at me with concern and said, “You don’t need another child with special needs.”

After my stunned silence of a few beats, I informed her that before I became pregnant, I had considered adopting a second child with Down syndrome. “Huh,” was her response.

Did that doctor’s personal opinion of children with disabilities influence her unsolicited advice? Evidently. If I didn’t “need” another child with special needs, what would she have advised me to do with the life growing within me?

Doctors are trained to be prepared for almost anything, medically speaking. One area of knowledge that often lacks relates to people with disabilities. Medical professionals have shockingly little training about Down syndrome in particular. In terms of counseling about Down syndrome termination, the effect of medical professionals’ preconceived notions of disability makes the difference between life and death.

Spend a little time on message boards for Down syndrome termination and you will see some recurring themes. The women are unsure. They question their decision to terminate and the advice they were given by doctors and genetic counselors.

In a recent search on Babycenter.com, I discovered a post where women discussed the “disconnect” they experienced between what their doctors told them about Down syndrome and what they repeatedly observed about Down syndrome in the media, in their communities, and online.

One commented, “But sometimes I do wonder why there isn’t a solid research document that says what the doctors are telling us? That statistically the DS cases we see are the minority?? It is hard to prove anything when the only published data seems to support that DS is wonderful and compatible with life. I know there is rhetoric that it’s to get funding or whatever, but there should be the same medical documentation available that supports the statistics that we are all told at the doctors.”

Not one was willing to admit that the information they had been provided prior to Down syndrome termination was indeed incorrect. The “statistics” themselves were reportedly grim. Most had the tone of one mother’s contribution: “We made the decision based on the information our doctor gave us.  He told us that 95% of T21 [diagnoses] are terminated, and DS kids you see functioning are the one percenters.  The rest end up in hospitals and group homes.”

Not just the doctors involved, but the genetic counselors also made an impact for these women. One contributed, “My genetic counselor told me that the kids you see out and about are about 10% of the T21 population.  She told me she worked with T21 kids who would just sit there, totally unresponsive. Many people with T21 exhibit horrible behavioral patterns: throwing fits, even getting violent. Maybe not the majority, but quite a lot, according to my counselor, who is pretty knowledgeable about T21.”

There are at least as many caring, wonderful doctors and genetic counselors as ones whose personal prejudices influence their counseling. However, all of the women in that Down syndrome termination post discussed ending their much-wanted pregnancies, most due to medical professionals’ advice.

The aftermath of Down syndrome termination is heartbreaking. The women believe that “high-functioning” people with Down syndrome they see in public are a minority. They conclude that the rest of the people with Down syndrome in the world are sitting unresponsive in institutions or in their homes.

They carry the burden of their pain believing that they spared their child from a lifetime of it.

Tragically, the prejudices against babies with Down syndrome are mostly unfounded and generally untrue.

My son Kyle is an average child with Down syndrome. He has some of the associated medical conditions: hypothyroidism, glasses, one small heart defect (bicuspid aortic valve), and low tone. He also was born with bilateral clubfoot (not related to DS). He has had two surgeries in his life: tendon transfer and T&A. There are no additional surgeries on the horizon.

Kyle is five years old and goes to full-day kindergarten with his typical peers. Kyle is learning to read. He walks but doesn’t run. He has delayed speech but continues to add to his hundreds of spoken words. He knows all the letters and numbers to 20. He shows ability to learn just as my other children do; however, each skill has developed at a slower rate. He will continue learning.

My son is not in a very small minority of children with Down syndrome who are “out and about.” There are thousands of children just like Kyle born in the United States every year. I have come in contact with hundreds of children with Down syndrome, none vastly different from Kyle.

The families blessed by Down syndrome are largely happy. Parents describe how Down syndrome enriches their lives and relationships.

I am blessed to have other children as well. They are typically developing and I know how fleeting their childhoods are. As such, the time Kyle takes to learn skills gives me the gift of experiencing his developmental stages more fully as a parent.

I am realistic and know that my life will always be a little more challenging because of Kyle. I also believe that we experience the most joy and satisfaction in life’s hurdles.

Kyle’s siblings may need to be responsible for him later in life. I have met many people who take care of a sibling with Down syndrome–all have spoken highly of the experience and how it adds value to their lives.

Kyle’s future is not scripted by any historically “true” perceptions of Down syndrome. Decades from now, the technologies and advantages of our time will be evident in the successes of people with Down syndrome. I hope it does not take that long for people’s perceptions to change.

In the meantime, it is medical professionals who are on the front lines when parents make a decision about Down syndrome termination.

Medical professionals are trained not to let their personal prejudices influence their counsel, but we are all human. The critical issue is that Down syndrome must be represented accurately to prospective parents. The information given must reflect advances made in education and therapy that continue to enhance the potential of people with disabilities.

People with Down syndrome have intrinsic value not only to their families, but to the world.

Down syndrome termination quality of life

Please do all you can to further your knowledge of Down syndrome, starting with visiting http://brighter-tomorrows.org/ to complete a tutorial on delivering a Down syndrome diagnosis. A short, free webinar by Dr. Brian Skotko, a key Down syndrome researcher, is available at www.phscpd.org. Lastly, The National Down Syndrome Society at http://www.ndss.org features informative videos, research papers, and webinars that are beneficial to health providers.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

11 thoughts on “To parents considering Down syndrome termination

  1. terrypetersen

    I have a young friend at the Y who will be legal guardian for a girl she calls her sister. She isn’t. Payton has both Down syndrome and autism; she does not talk. Blogs like this let the world know that people with Down syndrome are people. With gifts! Those gifts can help heal the world. Let the doctors of the world learn, too.

    Reply
  2. Trudy

    This is not just a problem with DS. Even though i had a immediate apt. with a genetic counselor immediately following my ultrasound to confirm Spinia Bifida I was refused my ultrassound video. When we insisted the nurse got the tech to comeback and confirm the fear. He told me my daughter would be a vegetable, never walking or talking and that “I was going to terminate”. I was given little info at the next apt but was asked if i wanted to meet with specialist to get more concrete information and testing to know what to expect or did i want to explore other options? My beautiful talkative adaptive sports ( Basketball and track and field) playing girl is now 18 and a joy to all who meet her. She enriches the lives of so many, especially mine. We have encountered a few more bumps in the road than the top specialist predicated, a learning disability, compared to his prediction that she would be a few months behind learning to do physical things and would have bad handwriting. We knew crutches and braces would be required and maybe someday a wheelchair. A few stupid words from someones whos job it was to just take pictures and report to the Dr. could of cost the world a great person. I know i looked 16 instead of 20, I know i had my sister with me instead of a husband, but i had 5 years training and experience working with kids with special needs under my belt. God had a plan for us. I have worked with many children with DS and i value those experiences and fondly remember those little ones who brought joy to my life and those of their families.

    Reply
  3. seedpodlian

    I once sat in a waiting room and an anxious woman about my age (late 40s) sat there with me. It was a long wait and we started taking. I was huge, ‘Twins?’ ‘No just the one.’ Then she told me she was back for a scan. Her tests had come back suggesting a high ‘risk’ that her unborn child was possibly, probably DS. I took a deep breath and smiled a big smile. A knowing smile full of Joy. I told her that whatever she chose to do was ok with me because I’m not one to judge but I asked her if she knew any people with DS. She didn’t. So I told her about the DS I have known. I told her that their parents always seem to come to the same conclusion, to use the same word. Joy. That despite all the hurdles and a world that often doesn’t understand, the sometimes loneliness that can come with being the parent of a child with DS that they have not regretted it. I also told her that if she didn’t feel she could travel that path IT was ok and that her fear and heartache was understandable as well. No one is saying you can’t grieve for the loss of the ‘normal’ child you had assumed you were having. But in the end I could see (she was holding a toddler lovingly the whole time) she was a pretty great mum and any child would be lucky to have her DS aside. She started crying and thanked me- she said everyone else talked as tho a great tragedy had befallen her. She laughed and wiped away tears and told me she had come in and sat in the waiting room and prayed someone would give her permission (permission!!) to want to keep her child regardless of what challenges they might face. How many other parents would choose to not terminate if they felt supported and if they knew their child was valued by all of society not just themselves?

    Reply
    1. Katie J.

      I love the thought of giving someone permission to carry their baby to term. You would think it wouldn’t be necessary, but I think it is exactly what many of the women in similar situations are waiting for. What an incredible memory for you to treasure.

      Reply
  4. iterum

    Thank you for this post! It is so important for everyone to be aware of how our medical communities push for the elimination of babies with Ds. We should all know what to expect from our doctors. Unfortunately, What is being told to so many mothers in regards to their babies who may have Ds; is wrong and absurd. It is beyond upsetting that so many doctors push for termination of these babies. So many doctors have agendas. It is heartbreaking to think that the mothers on those chat boards, aborted precious babies, based on some inaccurate and prejudice information from doctors they thought they could trust! They say information is power; in this case, it’s a matter of life and death!

    Until this extreme prejudice at the hands of our medical communities stops; It is your story Katie and stories like yours that will change the hearts and minds of the world. I hope you will continue to be a voice for the voiceless.

    Reply
  5. Catherine

    It was extremely inappropriate, absolutely rude for that doctor to have said what she did to you. Your obstetrician should be bringing up the chances of issues with the fetus and the implications of them, and laying out the options, presenting them in an unbiased way. OBs who have not done this have been sued when a child is born with conditions needing extra care and expense that could have been predicted through prenatal testing. Sadly, that is the way of the world these days.

    Just as the doctors should not be just giving the bleakest pictures, or infusing their own opinions and prejudices into the information about conditions like DS, nor should they be proponents of raising such children and painting rosy pictures. I know some parents who wish they had NOT embarked on such journeys when their children got older, and the parents aging too, has led to some difficult times, difficult decision and heartaches. A well balanced presentation of facts, referrals to different viewponts really should be given to parents who want to as much of possibiliites out there for them.

    Reply
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