VIEWS
Worthy of Life
Gregory K. Laughlin on the Wrong Choices Given to Parents of Disabled Children
On August 4, 2013, the New York Times published an article by Dr. April R. Dworetz titled "End of Life, at Birth." Dr. Dworetz is an assistant professor of pediatrics, specializing in neonatology, at Emory University. She used the account of a girl who was born "at 23 weeks' gestation and weighed a little over a pound" to address the larger issue of when to resuscitate and treat infants born prematurely, particularly when, as in the case of the girl she called "Miracle," the prognosis for survival is "bleak" and the child is likely to be disabled if she survives.
Miracle's parents differed on how aggressively the doctors should pursue treatment. Her mother wanted them to try to save Miracle despite the risks. Her father, witnessing all the painful things done to Miracle in the effort to save her, angrily asked Dr. Dworetz, "Why do you do this? Why do you keep these babies alive?"
When I read this article, it immediately struck a chord. I know something about treating a child whose condition is serious and who will live the rest of her life with significant disabilities if she survives a health crisis. My daughter Bethany was born with Rubinstein-Taybi Syndrome (RTS) a chromosomal abnormality that occurs in an estimated 1 in 125,000–300,000 births.
Our Bethany
Before her birth, we had no reason to suspect that Bethany was anything other than a typical baby. The first indication that something was different came as soon as she was born. Unlike her older sister and brother, who were both born practically bald, with just a small amount of light brown hair, and with baby blue eyes and very light complexions, Bethany was born with long black hair that streamed down to her upper back, and with black eyes and a reddish complexion. Her fingers were stubby and her thumbs somewhat flattened. She also had a simian crease across one of her palms, a common trait among those who have chromosomal abnormalities (though it is also sometimes present among those with no abnormalities). Within a few minutes of her birth, as her extremities began to darken into a troubling blue, the nurses rushed her to NICU and placed her on oxygen.
Despite our nagging concerns, Bethany's pediatrician advised us not to worry. The first few doctor visits went fine. Then, at six months, the pediatrician said that Bethany's head was not growing as it should. She suggested that we see a pediatric neurologist, who ordered MRIs. While the doctor couldn't diagnose Bethany's underlying condition, she told us that our daughter would have learning disabilities and suffer from seizures due to brain abnormalities that, by now, even my untrained eyes could clearly see.
We sought other consultations, but it wasn't until Bethany was 11 months old that we finally received a diagnosis of RTS. We were devastated. There would be no cure. Our precious little girl was and would remain disabled. All we could do was manage the situation and adjust our lives accordingly.
The seizures we had been warned of came. A couple of years ago, they became much worse, occurring as often as once or more a week, and with greater severity. On one occasion, the school at which she received therapy called the paramedics. She was turning blue by the time they arrived, but they were able to stabilize her. We struggled to find a solution, and after months of trying one medicinal cocktail after another, we regained control. She still has seizures about every six weeks, but they are not as severe.
Soon to be eight years old, Bethany is nonverbal, is not toilet trained, has trouble walking long distances and on uneven surfaces (such as lawns and playgrounds) and climbing stairs, and has very significant cognitive impairments. At school, she spends most of her days in the special-needs room, only rarely visiting the regular classroom for special occasions.
A Journal of Mere Christianity—Delivered to Your Door
- Essays on theology, culture, and the Church
- Contributors from across the Christian traditions
Six print issues (one year) of Touchstone, plus full online access and PDF downloads for only $39.95.
Get a one-year full-access subscription to the Touchstone online archives for only $19.95.
bulk subscriptions
Order Touchstone subscriptions in bulk and save $10 per sub! Each subscription includes 6 issues of Touchstone plus full online access to touchstonemag.com—including archives, videos, and pdf downloads of recent issues for only $29.95 each! Great for churches or study groups.
Transactions will be processed on a secure server.
more from the online archives
35.4—Jul/Aug 2022
The Death Rattle of a Tradition
Contemporary Catholic Thinking on the Question of War by Andrew Latham
35.6—Nov/Dec 2022
on the Divine Promise Fulfilled by the Child of Bethlehem by James M. Kushiner
calling all readers
Please Donate
"There are magazines worth reading but few worth saving . . . Touchstone is just such a magazine."
—Alice von Hildebrand
"Here we do not concede one square millimeter of territory to falsehood, folly, contemporary sentimentality, or fashion. We speak the truth, and let God be our judge. . . . Touchstone is the one committedly Christian conservative journal."
—Anthony Esolen, Touchstone senior editor
