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Down Syndrome Families Divided Over Abortion Ban
December 13, 2017 at 11:52 AM


Down Syndrome Families Divided Over Abortion Ban


Kelly Kuhns's 2-year-old son Oliver was born with Down syndrome. She says that she was shocked when a prenatal test revealed a Trisomy 21 mutation. But, she says, "he's still a baby. He's still worthy of a life just like everybody else."

Sarah McCammon/NPR

When a pregnant woman finds out that she's likely to give birth to a baby with Down syndrome, she's often given the option to terminate the pregnancy. But families affected by the genetic disorder, which causes developmental delays, are conflicted over whether such abortions should be legal.

Ohio could soon become the latest state to restrict abortions based on a Down syndrome diagnosis. A bill that would make it a felony for doctors to perform abortions after a Down syndrome diagnosis is moving through the state legislature and could be ready for Gov. John Kasich's signature as soon as this week.

"He's still worthy of a life"

The mothers in this story have a lot in common.

Both live in Ohio. They're a few years apart in age, both work in the medical field, and each has a child with Down syndrome.

Kelly Kuhns, 36, lives with her husband and their three children outside Columbus. The youngest, 2-year-old Oliver, was born with Down syndrome.

Kuhns, who works as a labor and delivery nurse, says a prenatal test during her pregnancy with Oliver revealed a mutation called Trisomy 21.

"When my provider called me and told me that the test came back positive for Down syndrome, I was definitely shocked. It was not what I was expecting at all," Kuhns says. "I grieved — deeply."

But Kuhns says she never considered ending the pregnancy.

"He's still a baby. He's still worthy of a life just like everybody else," she says.

Kuhns has testified in support of the Ohio bill. But Kuhns says she keeps her opinion to herself at local meetups with other parents of children with Down syndrome because the issue is so controversial.

"I try not to bring this up, just because people are so passionate," she says. "And I value my friendships with people."

Down syndrome as an "easy face"

About two hours away in Cincinnati, Emily Chesnut lives with her husband and their four children, including 6-year-old Nora. Chesnut was pregnant with Nora and her twin when she was told that Nora had a heart defect that could indicate the presence of Down syndrome. Chesnut opted not to get any further testing to confirm or rule out the disorder, because she says she was more concerned about her daughter's heart condition.

"I had seen people with Down syndrome before ... and I knew that they lived good lives," she says.

Emily Chesnut with her daughter Nora, 6.

Sarah McCammon/NPR

Chesnut, who's 40 and works in IT for a local hospital, believes women should be given a choice about whether to continue such a pregnancy. She and other abortion-rights advocates argue Down syndrome is being used to push an anti-abortion agenda in a handful of states including Ohio, which has passed several new abortion restrictions in recent years.

"Down syndrome is an easy face ... Everybody knows somebody or has seen somebody or has a friend of a friend [with Down syndrome]," Chesnut says. "So I really think Down syndrome is just kind of being the pawn to the bill — which is just restricting women's choice."

Disability rights and abortion rights collide

Some physicians and groups, including the American Congress of Obstetricians and Gynecologists, have raised concerns that such legislation could limit important conversations between doctors and pregnant women.

Catherine Romanos, a family practice physician based in Columbus who performs abortions across Ohio, opposes the bill. She says she's talked with women facing a Down syndrome diagnosis, and they have a lot of questions.

"They need information; they need their options," Romanos says. "And then they need their healthcare professionals to be able to support any decision that they make."

Supporters, meanwhile, argue it's about protecting and valuing people with disabilities.

But among advocates for people with Down syndrome, there's also disagreement about banning abortions. Neither the National Down Syndrome Society nor the National Down Syndrome Congress have taken a position on the Ohio bill.

Many families in the community are concerned about recent reports from Iceland that the genetic disorder has come close to being eradicated there through prenatal testing and pregnancy termination, says Heather Sachs. She's the policy and advocacy director for the National Down Syndrome Congress, and the mother of a 12-year-old girl with Down syndrome.

"It hurts, especially when you have family members with Down syndrome who are very much integral parts of their families," Sachs says.

But on the question of whether to ban such abortions, Sachs says her organization isn't taking a position. She says abortion remains a divisive issue in the Down syndrome community, much like it is everywhere else.


https://www.npr.org/2017/12/13/570173685/down-syndrome-families-divided-over-abortion-ban

Replies

  • anxiousschk
    December 13, 2017 at 11:55 AM

    Quite the contrast to Iceland where many mothers make the choice to terminate after having the (optional) screening -- to the point that children with Down Syndrome are quite rare now.  

  • WilyMommy
    December 13, 2017 at 12:43 PM

    I have no clue what I’d do in such a situation. To me, it’s one of those things you can’t even begin to understand, let alone judge others for their decisions, unless you’ve been there yourself. 

    I’m definitely against the bill.

  • EarlGrayHot
    December 13, 2017 at 2:01 PM

    Abortion is LEGAL according to our Constitution and that decision should be left to the individual.

  • proudmwdwife
    December 13, 2017 at 2:04 PM
    I think it's my choice so the government and other mothers need to back off.
  • handy0318
    December 13, 2017 at 2:15 PM

    I'm about as pro-life as they come and I'm very much against the idea of banning abortions after a Trisomy 21 diagnosis...

    My main reason is noted in the article...

    "Some physicians and groups, including the American Congress of Obstetricians and Gynecologists, have raised concerns that such legislation could limit important conversations between doctors and pregnant women.

    Catherine Romanos, a family practice physician based in Columbus who performs abortions across Ohio, opposes the bill. She says she's talked with women facing a Down syndrome diagnosis, and they have a lot of questions.

    "They need information; they need their options," Romanos says. "And then they need their healthcare professionals to be able to support any decision that they make."

    People with Downs can and often do lead perfectly happy lives and are a joy to their loved ones. But, the key is early knowledge, early information, an early plan of action. A bill like this has the potential of negatively impacting all of that. 

    If we don't want to wind up like Iceland (and I surely hope we don't) the better course of action would be to fight against the myths and misinformation about Downs and work towards better understanding and interventions.

  • 3gr8tKids
    December 13, 2017 at 2:20 PM

    The problem with the test is that sometimes its wrong. My friend was told by her OBGYN to abort because her test came back saying her child would be severely handicapped they decided to go through with the birth and thank god, he is 30 now and not a single thing wrong with him. 

    Abortion is a private matter it doesn't require everyone to be on board with it so the idea that parents of special needs children are not happy is of ZERO consequence to me. 

  • MissAndree
    December 13, 2017 at 2:25 PM
    I don't understand why any family with a child who has down syndrome is against any other person having an abortion because their pregnancy is a fetus with Trisomy 21.
    Any person should be able to have an abortion for any reason. It has no impact on people who already have a child with down syndrome.
    It's not like they are trying to legislate abortion of fetuses who have tested positive for Trisomy 21.
  • PinkButterfly66
    December 13, 2017 at 2:28 PM

    The law in Ohio will be overturned once it makes its way through the courts.  When I was pregnant with my daughter, I had amniocentesis done and I would have aborted if downs syndrom had been found.  I know my limitations.

  • bluefirewolf
    December 13, 2017 at 2:28 PM

    It's a woman's choice whether she wants to continue a pregnancy or not, no matter what the reason and it certainly doesn't depend on what the govt or other mothers feel.  - Down syndrome has many aspects to it that are not being addressed in the article - When you see people on t.v. with Down Syndrome they are doing great - like the actress on American Horror Story, or the one who became a model - but there are the cases you don't see and that is one of the problems.

    Here is some info on Down syndrome:


    Types of Down syndrome

    There are three types of Down syndrome:

    Trisomy 21

    Trisomy 21 means there’s an extra copy of chromosome 21 in every cell. This is the most common form of Down syndrome.

    Mosaicism

    Mosaicism occurs when a child is born with an extra chromosome in some but not all of their cells. People with mosaic Down syndrome tend to have fewer symptoms than those with trisomy 21.

    Translocation

    In this type of Down syndrome, children have only an extra part of chromosome 21. There are 46 total chromosomes. However, one of them has an extra piece of chromosome 21 attached.

    At birth, babies with Down syndrome usually have certain characteristic signs, including:

    • flat facial features
    • small head and ears
    • short neck
    • bulging tongue
    • eyes that slant upward
    • atypically shaped ears
    • poor muscle tone

    An infant with Down syndrome can be born an average size, but will develop more slowly than a child without the condition.

    People with Down syndrome usually have some degree of developmental disability, but it’s often mild to moderate. Mental and social development delays may mean that the child could have:

    • impulsive behavior
    • poor judgment
    • short attention span
    • slow learning capabilities

    Medical complications often accompany Down syndrome. These may include:

  • PinkButterfly66
    December 13, 2017 at 2:35 PM

    The early blood test may have false positives but amniocentesis does not as it pulls dna from the amniotic fluid.  

    Quoting 3gr8tKids:

    The problem with the test is that sometimes its wrong. My friend was told by her OBGYN to abort because her test came back saying her child would be severely handicapped they decided to go through with the birth and thank god, he is 30 now and not a single thing wrong with him. 

    Abortion is a private matter it doesn't require everyone to be on board with it so the idea that parents of special needs children are not happy is of ZERO consequence to me. 


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