We need to offer women a full spectrum view of what might happen to their future children — not showcase a skewed sample of positive individual experiences.
As a pro-choice mother to an eight-year-old boy with Down syndrome, I consider a woman’s choice and reasoning related to abortion to be her business alone. Women who receive a prenatal diagnosis that they’re carrying a child with Down syndrome should have access to objective information about what it means to mother a child with this disability. Then they should have complete freedom and privacy to make their own decisions.
Unfortunately, objective information can be hard for these women to find. Many obstetricians and gynecologists have little training on genetic counseling and provide outdated or incorrect information. Others focus on medical and developmental challenges while neglecting the social context. Women are given a very narrow — mostly negative — view of Down syndrome when, in fact, children and adults with Down syndrome live varied and often satisfying lives driven by their natural abilities and the environments in which they live. Very little is predetermined for a fetus with a prenatal diagnosis.
Recent articles in Good Housekeeping and The American Journal of Medical Ethics, Part A, demonstrate how advocates in the Down syndrome community often respond to medical negativity by taking the narrative to the other extreme — minimizing challenges associated with parenting a child with Down syndrome. While they mean well, these articles offer incomplete and potentially misleading information, too.
The Good Housekeeping article discusses how the increased availability of prenatal screening and testing may be lowering the birth rate of children with Down syndrome. In an effort to balance the assumptions that lead women to terminate a pregnancy, the article provides vignettes from mothers currently parenting a child with the diagnosis. I’m confident that the individual stories are relayed accurately, but they’re not representative of the full range of experiences.
For instance, the article discusses the relatively high risk for medical issues, such as “congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, celiac disease, and thyroid conditions”, but the emphasis is on the fact that many of these conditions are treatable — not that the treatments can be costly and time consuming. I wish our community would use its access to media to advocate for better support for families caring for children with Down syndrome and other disabilities, rather than brushing their very real challenges to the side.
My son had three open-heart surgeries and 19 hospitalizations before his fourth birthday. Thankfully, he’s now a healthy kid. But in those early years my partner and I were forced to take out a second mortgage on our home in order to make up for our unpaid time off of work and the cost of hiring a nanny for a boy who was too sick to be exposed to the germs in day care.
We were privileged in that the Family and Medical Leave Act protected us from being fired from our jobs and that we had home equity we could borrow against. Other families I know have seen their incomes halved as one parent quits their job to care for a sick child. Others rely on extended family and friend networks to keep their lives afloat while their child is sick. These stories are not particularly uncommon in the world of parenting children with Down syndrome, but you will rarely find them in articles like the one written for Good Housekeeping.
It’s impossible to know the extent of medical complications a fetus diagnosed with Down syndrome will face once they’re born. All we know is that these children are more likely to need more intensive medical care than a typical child.
Every woman has an absolute right to honestly assess her willingness and resources to deal with these unknown issues. Her economic status and social support system may impact her ability to risk having a child with medical complications. No one should assume away her unique challenges. However, as is often the case, the reporter for Good Housekeeping didn’t dig beyond the happy story on the surface; that people with Down syndrome are living longer as better treatments have been developed for their most common medical issues.
It’s not lost on me that this article came out in the shadow of discussions over the repeal of the Affordable Health Care Act and cuts to Medicaid. Insurance-related issues, such as pre-existing conditions and lifetime caps on insurance payments are critical for medically complex children and their families. But rather than discuss those issues, the Good Housekeeping article paints medical complications, like surgery to correct congenital heart defects, as nothing more than minor bumps in the road.
In December the American Journal of Medical Genetics, Part A published a study that estimated out-of-pocket medical health costs for children with Down syndrome vs. their medically typical peers. The study, based on insurance claim data from 1999-2013, found that the average out of pocket costs through age 18 were $18,248 more for children with Down syndrome than those without.
The original study cites many limitations, including the fact that the data set only included families who were privately insured through a subset of Fortune 500 companies. The study estimates “medical expenses” strictly based on bills sent to insurance companies but excludes other costs related to caring for a sick child, like the $75,000 second mortgage my partner and I took on our home.
But once the results are taken out of the context of a peer-reviewed journal, the caveats start to disappear. For instance, a news release from Massachusetts General entitled “Medical care for a child with Down syndrome probably not a financial burden for most families”, includes the following excerpt:
“I think many people will be surprised to learn that parents have few extra medical expenses when raising a child or adolescent with Down syndrome, since health insurance covers most of the costs,” says Brian Skotko, MD, MPP, co-director of the Massachusetts General Hospital (MGH) Down Syndrome Program and corresponding author of the paper. “After expectant couples receive a prenatal diagnosis of Down syndrome, many of them search online for information and find the lengthy list of medical conditions that might accompany their child. This can leave them to wonder whether their families will be facing financial hardship; so we wanted to provide them with accurate data reflecting the current situation.”
In fact, the conclusion overlooks the fact that families may be facing financial hardship not due to medical claims but due to rearranging their lives to care for a child with frequent hospitalizations or an immune system that can’t tolerate public day care.
Within two weeks, the study was referenced in an article on the Down Syndrome Prenatal Testing website. Under the headline “Down Syndrome: not a costly burden to be prevented”, the author Mark Leach comes to the marketing-friendly conclusion that “Research now shows that a child with Down syndrome costs less than $3 a day more in health expenses than a child without Down syndrome.”
Again, the definition of medical expenses is blurred. The toll on a family’s ability to earn income while caring for the child is ignored, although it often dwarfs the out-of-pocket costs associated with insurance claims. Moreover, there is some economic bias in reporting the cost as $3 a day, because even paying an extra $1,000 a year is difficult for some families to manage.
I adore my son. My partner and I knew about his Down syndrome diagnosis and his heart condition before his birth but I never considered an abortion. Most of my reasoning was esoteric — I believe it’s important to take the forks in the road that the fates offer us. But I could also afford to focus on my spiritual beliefs because I knew we had the socioeconomic privilege to navigate life with a son with Down syndrome.
Not everyone has the same practical privilege or similar spiritual beliefs. Not everyone is willing to adapt their lives for a child with disabilities. We need to offer women a full spectrum view of what might happen to their future children — not showcase a skewed sample of positive individual experiences.
Moreover, the best thing for people with Down syndrome, and disabilities generally, is to avoid focusing on the best-case scenarios. Rather, we need to advocate for a sufficient economic and social support system. I don’t know how we do that while simultaneously claiming that “a child with Down syndrome costs less than $3 a day more in health expenses than a child without Down syndrome.”
Anne Penniston Grunsted writes about parenting, disability, and family life from her perspective as a lesbian mama. She has been published in The Washington Post, Brain, Child Magazine, Mamamia, and won the 2014 Nonfiction prize from Beecher’s Magazine. She lives in Chicago with her partner and son.