Changing the conversation on abortion and Down syndrome

Imagine you are a young pregnant mother. You get all the screenings recommended by your OB/GYN, and one comes back with raised odds that your baby will have Down syndrome. You are scared. You ask your doctor for more information. She tells you that if your baby has Down syndrome, there is a good chance he won’t survive, or if he does, he very likely could be unresponsive, incapable of learning, and suffer debilitating illnesses and physical challenges.

Next you see a genetic counselor. She tells you that the people you see with Down syndrome “out and about” represent only 10% of people with Down syndrome. She asks you to think about future–who would care for him when you are gone? Could you put that burden on your children?

You are faced with the toughest decision of your life. You try doing some research, but don’t know what to believe. Your doctor knows best, right? You decide that even though you love your baby with all your heart, it would be the best decision to let him go, to free him of a life with such terrible quality. You terminate the pregnancy. You decide to live with the heartache for the rest of your life so that he will never have to suffer.

The above was a compilation of real stories from a public termination support forum. The two impressions I have from reading the posts are 1) too many people are making decisions based on misinformation, and 2) women who terminate are walking around with intense grief and sadness that they feel they must hold in secret for fear of being chastised.

I’m not okay with either one.

These parents had to make the ultimate choice, and they did what they believed would be best for their babies. Their grief is raw, they have doubts, they second-guess their decision. The most heartbreaking aspect is that the pain they live with is also completely preventable.

The issue goes much deeper than any pro-choice/pro-life debate, because these babies were WANTED. Every single comment I read was from someone who tried to get pregnant, wanted their baby, and changed their mind after they got a diagnosis of (or some just increased odds for) Down syndrome (T21). They did some research, listened to their doctor and genetics counselor, and then decided the best course would be to terminate.

I will start by acknowledging that for the foreseeable future, abortion is not going to be outlawed. That’s aiming a little high. However, we don’t need to start by changing the laws; first we need to change the language.

In every pregnancy, you go into the doctor’s office and have a sit-down with the nurse to go over your medications, your health history… in typical pregnancies why do none of the medical professionals start the conversation like this?

So, you’re having a baby! You know it’s going to be a lot of hard work, right? And there are so many unknowns, so many things that could happen. Your baby could lose oxygen at birth and have brain damage. You need to be prepared for that possibility. There are things doctors won’t see on the ultrasound, big health problems that could appear at birth or even creep up on your child later. Consider that your baby could grow up normally but later get hit by a car or otherwise injured and you would have to find a person to take care of your child for the rest of their life. Just think about all the uncertainty, and try to decide if you really want to have this baby. If you decide not to, there are plenty of options.

If this is not the conversation in a typical pregnancy, why does it become the conversation when there is a prenatal indication of Down syndrome?

I admit my life is not as easy with a four and a half year old with Down syndrome as it would be with a typical kid of the same age. Is it as rewarding? MORE. Is it as meaningful? MORE. Will my son have a good life and be happy? ABSOLUTELY.

The repeated theme in the parents’ reasons for terminating above is that “the kids with DS that you see ‘out and about’ are not the majority.” Even that a push for government funding is behind the “rosy picture” of Down syndrome. And that more likely, if their babies had been born, they would have been in the majority of kids with Down syndrome who “die young (usually before age 30) or are so severely handicapped that they are permanently institutionalized or in permanent home care.”

INCORRECT. ON ALL COUNTS.

My son is in the majority. Kyle can walk, knows a few hundred words, knows his letters and numbers, sits at the table and eats nicely, and will go to kindergarten next year with the rest of his peers. His three siblings adore him and celebrate his accomplishments.

siblings
Kyle is an average kid with Down syndrome.

Here are some other completely typical, average people with Down syndrome:

peoplewithds2
Maybe consider that the information provided by medical professionals is out of date?

The new generation of kids with Down syndrome is the new normal, the new majority. Unfortunately, the people at the front lines don’t seem to know it yet.

In fact, people with Down syndrome have scarcely been given a chance in recent history. First they were institutionalized, just as they are still in many countries. But in the U.S., when parents began questioning that practice in the 60s and 70s and insisted on bringing their babies home and insisted that they should be able to go to school, the laws started to change. This could have made an incredible difference for new babies born with Down syndrome, but the new realization came at the same time as two strikes against Down syndrome: Roe vs. Wade and prenatal testing.

Laws aren’t going to change–got it. Acknowledged. Not going to change anyone’s mind on abortion. Check.

So how about this? Remove abortion from the conversation. Just like when a woman gets pregnant and nobody goes around telling her she has “options” because guess what? She knows that. And if she has a positive screen for Down syndrome, she still knows that. Nobody needs to spell it out for her.

But by including talk of abortion with a Down syndrome diagnosis, medical professionals are forcing parents into a corner. They are forcing parents to make a decision they might not even have considered. They are planting ideas of a horrible, suffering, painful existence that could be prevented with one life-changing decision.

skys the limit

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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.

24 thoughts on “Changing the conversation on abortion and Down syndrome

  1. Heather Hicks

    This post makes me ache. I ache for the misinformation these mothers are given, for the choice they felt they HAD to make. I wonder…did any of them talk to those of us who are parents? Our lives aren’t miserable, and we’re not all faking it for some political agenda. Since becoming the mother of a child with Ds, I’ve met dozens, if not into the hundreds, of other mothers. Our children are apparently all in the 1%, because they’re all doing great. I’ve only ever met one child with Ds who was very low functioning, but he also had other diagnoses that are not usual for children with Ds. I would say HE was the 1%…

    Reply
  2. leticiacvelasquez

    As a mom who refused prenatal testing to avoid the nightmares related my mothers above, and who is raising a daughter with Down syndrome and autism, I have several thoughts on this topic.
    The doctors are either ignorant of the prospects of living a fulfilling life with Down syndrome OR they know the truth, and are deliberately telling terrifying stories to scare moms into abortion. They may think they are sparing the mothers, the babies and society but as a society, we are past that type of “doctor knows best” paternalism.
    The moms are kidding themselves if they think that by abortion they have saved the baby pain (do some research about how much pain unborn babies feel, particularly later in pregnancy) or that it is less selfish. We can not spare our children pain in this life, we can only accompany them through it. That is our job as mothers, not to make a decision your very heart screams to you is wrong.
    My 13 year old Christina does not have a poor quality of life because she is very limited intellectually and has little language. Her life is very similar to my typical daughters. She is happy and sad, excited and frustrated like all teenagers. She is embarrassed by her mom, is a Daddy’s girl, has her favorite TV shows, loves attention when she gets dressed up and has her favorite pop songs.
    Who am I to decide her life is not worth living? If I even had the unmitigated gall to suggest she would be better of dead, she would look at me as if I were crazy. Christina loves her family, her pets, chocolate, swimming and most of all she loves life. Her life.
    I am a Catholic and look forward to seeing her fully functional in Heaven, singing God’s praises with full voice, and doing cartwheels in the Elysian fields. When her time comes. But I have NO right to decide when that time is. God gave her a life filled with purpose and she must live out her destiny. My older daughters my husband and I were chosen to guide, protect and learn from her in our mutual journey. That is what a family does. We grow as a unit, crying, laughing, working and loving one another with all our faults.
    And, God willing, we will celebrate that eternal Alleluia in Heaven together. And I suspect my daughter has seen Heaven a bit more clearly than we have, as she does not judge her neighbors by their abilities. She looks at them as friends.

    Reply
  3. Maggie

    I didn’t even know we had a political agenda??? Really??? This breaks my heart…. I pray for those women to have peace, but Lord, I also pray that they would stop trying to justify their decisions by spreading untrue information to others who are trying to decide whether or not to give birth to the life they created. 🙁 Sad, sad, sad.

    Reply
  4. Tanya

    I am disgusted. This sh** should never have been written. How dare you compare a typical child wuth a child that u know d*** well comes with very high percentages of health problems and then ask what drs beed to warn mums about?? A h*** of a lot. They need to he warned cause guess what? Its simply the truth of Down Syndrome. You wont succeed in trying to sugar coat it. Theres too much info out there and ut is accurate. This is coming from a mum whose child has almost everything on the health issue list and we regret getting pregnant every day.

    Reply
    1. Katie J.

      Tanya, I am deeply sorry that you have not experienced the same joy as other parents of kids with DS. It sounds like you have a lot on your plate right now. If there is anything I can do to help you get in touch with local organizations that can help, please send me a message at [email protected].

      Reply
  5. marloveab

    I feel so terribly sad for these people. They have been given such misinformation… here they are thinking they can trust their doctors and they can’t. I think of all the siblings who were robbed of having a brother or sister with DS; the joy they would have experienced…

    All we can do is help to spread the truth about DS. We can educate people, including doctors. I have a regular doctor I see for something else, but when he found out about my daughter’s dx, he really questioned me about why I didn’t abort. He asked me if I am religious, which I am not. I told him simply, “I believe in humanity, and when you meet my daughter, you will understand everything.”

    Reply
  6. Jim Walsh

    I expected a balanced view based on the title, but it appears to be a thinly-veiled anti-abortion plea, rather than description of the challenges and positives of a DS child. I’m disappointed to see you fall for the, “but they’re such happy children” trope.

    The reality of managing DS is not the epic, fluffy, pink, happy cloud you paint it to be. DS health and functionality issues exist on a spectrum and there are subtle physical and intellectual issues that can’t simply be painted over in primary colour shades.

    Some of the commentary you relay such as, “Next you see a genetic counselor. She tells you that the people you see with Down syndrome “out and about” represent only 10% of people with Down syndrome”, I have to strongly disagree with. Not a single medical or associated professional said anything of the sort. We only got that from people who still referred to Down Syndrome as “Mongolism”. People like my Mother-in-Law and a various relatives over 60 years of age.

    It’s a significant challenge to raise a DS child. You DO have to load your other children with the expectation of looking after their brother after you and your partner have died.

    I tend to agree with Tanya. You’re simply glossing over the hard, day to day, lonely grinding existence of being a parent to a DS child that many people, including medical professionals don’t believe have a right to life.

    My lad is remarkable. He’s won awards for dance. He’s nine but still doesn’t know his letters and numbers so I must challenge the assertion that your child does. I have never met a DS child under 12 who could passably read or count. Most of his peers are afflicted with multiple health , developmental, and intellectual/cognitive issues such diabetes, CP, autism, extreme developmental delay, heart defects, early onset Alzheimer’s in pre-teen DS children and so on. You mention low muscle tone like it is specific to your child. It isn’t. DS children are born with a third of the muscle mass of a normal child. This affects metabolic function throughout their lives and only strict management of diet and exercise can prevent obesity and obesity related complications. Couple this with the touch related textural issues that bedevil TS21 kids and you have a proper challenge to begin a solid food programme that is both nutricious and palatable.

    DS has only been “out” of the Insitution since the early 80s. We’re only just starting to understand the inherent deficits, in particular DS geriatrics, because once upon a time, the lack of understanding that DS lung function is massively reduced so a cold turns to pneumonia overnight used to kill these people in huge numbers, in institutions whose primary purpose was to hide DS, no manage, care or help the afflicted individuals, well before middle age.

    Reply
    1. Chaya

      There are many points in your post that I could respond to but I’d like to start with this:
      “You’re simply glossing over the hard, day to day, lonely grinding existence of being a parent to a DS child that many people, including medical professionals don’t believe have a right to life.”

      I, personally, have not found it to be a hard, grueling, lonely grinding existence. Maybe it has to do with where you live, but after my daughter was born I was inundated with phone calls from moms of children with DS in my community who reached out with offers of help and support. There are also multitudes of online groups that cater to all levels of functioning and all possible health issues that children with DS may have. In fact my circle of friends has only grown thanks to my daughter, and the friendships that I’ve formed due to the DS connection tend to be deeper and more meaningful than ordinary friendships.

      As to the second part of your statement, yes, I do believe it is a significant barrier to achievement in a society when there are those who believe you don’t have a right to life and are better off dead. That’s exactly the mindset that people in the DS advocacy community are trying to change. We will speak out about our child’s right to exist, our child’s right to have access to the same opportunities as other children. And we want other potential parents of children with DS to know that people with DS have a great deal to offer the world. Just like any other child, they have gifts and abilities that must be carefully nurtured and cultivated.

      I find it surprising that you have never met a child with DS under 12 who could read or count. Maybe that speaks more about the educational opportunities available to children with DS in your district rather than their inherent potential.

      Reply
  7. Lilli

    I, too, love Chaya’s response, and have only one thing to add to the discussion, directed to those who are focusing on the health issues associated with a DS diagnosis. A question, really. Are any of these health issues that a previous responder feels make having a child with DS so unbearable and regrettable, solely linked to DS? Can no other child be born with a heart defect? A learning or cognitive disability? Digestive issues? If so, then I have been misinformed my entire life.
    My point is this. Health, developmental and cognitive issues and disabilities are NOT synonymous with a DS diagnosis. Parenting is tough, a challenge, and very unpredictable. To hide behind a diagnosis to validate your struggles as parent is, in my opinion, the easy way out.

    Reply
    1. Katie J.

      Exactly! And the percentages too are misleading–it can be said that 50% of kids with DS have a heart condition, but Kyle would fit in that 50% and his doesn’t cause him any symptoms and didn’t require surgery. So having the health issues doesn’t always mean they will be serious either.

      Reply
  8. Barbara Sella

    Katie, I just finished reading this and several other entries on your blog. They are beautiful and wise beyond measure. And what a cute child Kyle is. I wish you and your family all the best and hope that your message will spread far and wide.
    Barbara

    Reply
  9. sherahdeedah

    I had the test done prior to Josie’s birth, and there was no indication of any abnormalities. When in recovery, the doc comes in to tell me they “think she has Down syndrome.” I can honestly tell you that had I known, it would not have made a difference. I would not have terminated the pregnancy.

    Abortion is a morality issue that should remain an individual choice. Just because I would not terminate, does not mean that every other woman on the planet has to believe the same. It is a serious issue with serious consequence. The spirit best be prepared for the guilt, that most likely, will ensue. If abortion was not bound to humanity and the sense of morality, there would be no consequence. We have choices, but must be prepared to live with whatever comes after. As for legislation concerning abortion or any other moral issue, stay outta my vagina, and I will stay out of yours.

    As for the medical stuff, I don’t do well with percentages. My daughter did not have the heart problem. She has had tubes in her ears, twice, and a new tear duct put in. She doesn’t wear glasses, and would give Usain Bolt a run for his money. Percentages? Nah. I suck at math.

    As for my Josie’s development….she will be in high school next year. It is written in her IEP that she is NEVER to have another psychological profile done. Why? Because she will stack 5 of the 10 blocks you ask her to, and give you the finger. She is feisty, outspoken, self-assured, and beautiful. Just ask her. She will tell you. Besides, she thinks we are the ones with the problem, and more often than not, I have to agree.

    Reply
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