Startling data on Down syndrome
Alecia Talbott was in for a surprise when she gave birth to her son, Ron, 11 years ago. The little boy had Down syndrome.
The chromosomal condition is the leading genetic cause of intellectual disability and also can present other serious medical conditions, including heart problems and stunted growth. It affects approximately one in 700 children, according to the Boston Children’s Hospital. But all this was news to Talbott, now the executive director of the Down Syndrome Association of Middle Tennessee.
“The hospital did not have info to give and share with us about Down syndrome,” Talbott said. “In fact one of the nurses came into our room. She said I feel so sorry for you that I googled Down syndrome,’ and she gave me a print out of an article from Google.”
To complicate things even further, Talbott’s pediatrician was put off by the diagnosis, sending the family in search of another provider. “It can be very difficult for families to find medical providers who understand the nuances of Down syndrome,” she said.
Down syndrome crossed into the news cycle recently when the state legislature passed the so-called “fetal heartbeat bill,” which, among other things, prohibits any abortion on account of the condition.
The ban is in response to some startling statistics. Though reliable data is scarce, the best calculations suggest that 67% of U.S. pregnancies where it is suggested the baby would be born with Down syndrome end in abortion.
This means there were 33% fewer babies in the U.S. Down syndrome community born now than there would have been if those abortions had not occurred.”
The statistics in Europe are even more startling, where abortion rates on account of Down syndrome may be greater than 90%, and Iceland claims to have all but eliminated Down syndrome births.
There is some debate, even among the Down syndrome community, over whether banning such abortions will have the intended effect, especially in a situation where doctors may already lack information and may be unsure what to say to expectant mothers.
“By restraining patients’ options, the bill would reduce the incentive to offer prenatal diagnosis, which in turn would have a harmful effect on medical care,” said Ellen Clayton, a professor of pediatrics and health policy at Vanderbilt’s Center of Biomedical Ethics and Society. “For example, without prenatal diagnosis, parents and their physicians would not have the chance they would have had to prepare for the birth if they had known that the fetus had a serious medical problem. That lack of preparation could harm the child’s health.”
Of considerably less debate among the Down community is the idea that abortion should not be the go-to option for parents who find out they will birth a child with Down syndrome. The trouble is that, like Talbott’s hospital encounter, the experience parents have can make all the difference.
“When the provider says ‘the baby you’re expecting has Down syndrome,’ it’s followed with ‘if you’re going to terminate, you have X amount of time,” Talbott said. “Depending on when that happens, from a parents perspective, it’s almost as if that’s expected, and it scares people into thinking they can’t handle a child with Down syndrome.”
So, in 2018, DSAMT and other organizations in the state pushed for the Down Syndrome Information Act, a bill that required the state Department of Health to make available updated information on Down syndrome to health providers and parents. It is now law.
The controversy surrounding abortion and Down syndrome will not always be limited to Down syndrome. In fact, such ethical and legal questions are only likely to grow more numerous as science makes available more prenatal testing.
“It would be good if as a society we were better at supporting all women and their families who want to have children with access to health care, good information to help them make the best choice for them, and adequate support after birth to help children thrive,” Clayton said.
The abortion debate is too frequently a binary one over choice or anti-choice. The questions here though are far more complex. They are about what kind of society we want to be.
Do we want to be ruthlessly loyal to science, shunting away lives that may be complicated but also courageous, or do we want to respond with compassion and love? Compassion and love sound like the better option, but it is also the hardest. It requires us to look deeply at what our society is and what it should be.
How can we make our health-care system more easily prioritize the needs of people with disabilities, or fund our education system more fully so that children with disabilities can learn to their greatest potential and contribute in their own way to enriching our society? You can’t fit the answer to that question on a bumper sticker.
Talbott’s son, Ron, is in school now, taking mainstream classes. He’s a Boy Scout. He can read. He can swim. He may go to college or maybe not, but like any 11-year-old, right now he is more interested in working at a pizza shop or a Halloween costume store. His life has meaning and value.
Alex Hubbard is a columnist for USA TODAY Network Tennessee. Email him at dhubbard@tennessean.com.