Brian Skotko has made his career working with families and children dealing with Down syndrome, and I’m very glad he has. Once again, he has partnered with other researchers looking at various medical, social and cultural issues related to Down syndrome. This time he and his collaborators were looking at the quality of life in families with a child who has Down syndrome. Their findings are encouraging and have been reported in the article, “Having a son or daughter with Down syndrome: Perspectives from mothers and fathers.” (Kudos to the American Journal of Medical Genetics for making this article available online for free!)
- 99% reported loving their child with Down syndrome.
- 79% report their outlook on life is more positive because of their child with Down syndrome.
- Only 11% reported the child with Down syndrome was putting a strain on the marriage – exactly the same number who reported their children without Down syndrome were straining a marriage.
Articles like this are so important because women frequently report a negative bias on the part of their health providers when a diagnosis is first made. Abortion is frequently anticipated by medical professionals before a conversation has even begun. Expectant mothers are too frequently told the worst case scenario rather than given a fully-informed view based on the actual experiences of families who have a child with Down syndrome.
Dr. Stotko’s newest study is designed to help provide better information to both families and health care providers.
But, while helpful, this study is not the answer. Those who make the case that families shouldn’t have to take on the ‘burden’ of parenting a child with Down syndrome will probably point to the following:
- The average household income of people who responded was more than double the national average, suggesting these families have more financial means to deal with issues related to disability than a typical family.
- Those reporting a connection to the Catholic church are over-represented in this study (34% of study participants vs. 24% of Americans as a whole); the Catholic church supports babies being allowed to live.
- 88% of families in this study are married; only 4% reported being divorced (other categories were widowed, single, and living with partner).
Hardest of all, 4% of respondents regretted having their child with Down syndrome. We should all hurt for those families – they need help.
But possibly the most limiting thing is the reliance on reports of feelings. We all know that feelings can change, both for the positive or the negative. And we know that we frequently need to preach to ourselves to remember the truth, to make sure that our fickle feelings don’t guide us down a dangerous path.
The truth is this: God knows the ends from the beginnings (Isaiah 46:8-11); makes all things turn out for good for his elect (Romans 8:28); and supplies every need (Philippians 4:19). We can trust him when nothing else makes sense.
So, let us use studies like this to help save babies and encourage families! But let us do so carefully.
For that 4% who live with regret about the life of their child with Down syndrome, let us pray for them and reach out to them with the truth that is far more glorious than their limited experiences. And we can boldly yet humbly guide others as we have been guided, including health professionals, toward the truth and the certainty of the sufficiency and glory of Jesus Christ.