Lives “worth living”

The American Academy of Pediatrics recently released updated health supervision and expanded support resources for the families of children diagnosed with Down syndrome.

The new guidance is life-affirming and cultivates a more positive, educational experience for families. It includes detailed instructions for doctors to deliver a diagnosis with compassion in an unbiased, factual, and supportive way. Additionally, families are now offered support resources they can access in the immediate aftermath of such a diagnosis.

Because Down syndrome (often known as trisomy 21) is one of the most common and well-known types of chromosomal disorders, physicians and healthcare teams must be prepared to work with families facing this diagnosis. The wide availability of prenatal testing means that many women now discover the condition early in pregnancy. Prenatal tests reportedly detect 80 to 90 percent of cases of Down syndrome and, unlike with some other genetic conditions, tests for this syndrome have high accuracy rates (though they aren’t correct in every case.)

As prenatal testing advances, this shift in diagnosis presentation can serve as a model for prenatal diagnoses across the board. Families ought to be offered truth wrapped in hope and support with every resource at their fingertips.

Though accurate records are difficult to find, it is estimated that 67 percent of U.S. pregnancies with a Down syndrome diagnosis end in an abortion, and one report estimates that 27,000 infants lose their lives due to predicted genetic abnormalities each year. In places like Iceland, the termination rate is nearly 100 percent. This can be attributed, in part, to a lack of support, information, and awareness.

When Danielle S. (who requested that we not use her full name) was told her son had a 99 percent chance of having Down syndrome, doctors were discouraging. After being given the diagnosis, Danielle said ultrasound techs were surprised she even wanted to see her son on the screen. Even after announcing her decision to continue her pregnancy, the genetic counselor from the doctor’s office pestered her with information on other options.

“I finally told her to never, ever contact me again,” said Danielle, who admits she would “give anything” to have those first weeks of diagnosis back and be told that her son was “going to be the greatest gift you never expected to your family.”

The updated American Academy of Pediatrics guidelines might have made a message like that a real possibility. The AAP guidelines combat a culture of fear and ignorance by requiring doctors to approach a diagnosis with positive reinforcement, including the presentation of up-to-date, accurate information, potential life outcomes, and positive perspectives within families that include a child with Down syndrome. The AAP illustrates that with three striking statistics: 100 percent of people with Down syndrome say they are happy with their lives, 79 percent of parents say their outlook on life is more positive, and 88 percent of other children in these families said they were better people because of their siblings with Down syndrome.

Because pediatricians serve as trusted sources and may have known a family for several years, their delivery of a diagnosis can make all the difference. The AAP urges doctors to prepare for questions, a thorough review of new information, and assistance in helping the family make decisions. Importantly, doctors should inform families that the quality of life and life span for those with Down syndrome has increased exponentially in the past several decades. Though they often have other health issues, those with Down syndrome can live until their 80s today.

There is much to learn about how to best equip and support people with Down syndrome, but no doubt must exist about the value of their lives to God. As Frank Stephens, a man with Down syndrome said in a widely shared clip in front of the United Nations Human Rights Council on World Down Syndrome Day, “I am a man with Down syndrome and my life is worth living.”

To be sure, some genetic abnormalities lead to worse outcomes than Down syndrome. Some parents are told that their unborn children are “incompatible with life,” but such phrasing is inaccurate. A beating heart signifies that life is, in fact, occurring—even if it may not be a long one. Every parent with a troubling diagnosis should be offered the kind of support the AAP recommends for those with Down syndrome. They should be made aware of support communities and the option for things like perinatal hospice and other medical interventions.

This compassionate guidance is long overdue. It’s also a rare touchstone of ideological overlap, where those who are pro-abortion and pro-life can agree that parents deserve all the relevant information, optimism, and support they can get at a time like this.