Miracles Worthy of Life
A father explains why we keep disabled children, like his daughter Bethany, alive
Miracle was born three months early and weighed a little more than a pound, and her prognosis was “bleak.” Her mother wanted doctors 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 her doctor, “Why do you do this? Why do you keep these babies alive?”
Her doctor, April R. Dworetz, described this exchange in an article in The New York Times titled “End of Life, at Birth.” 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. Bethany is nine now, but her prognosis is also bleak as the doctors account it.
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. She was born with long black hair that streamed down to her upper back, 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 sometimes those with no abnormalities have it).
Within a few minutes of her birth, as her extremities began to darken into a troubling blue, the nurses rushed her to the neonatal ICU and placed her on oxygen. Bethany’s pediatrician advised us not to worry and the first few doctor visits after that went fine.
Then, at six months, she 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 our daughter would have learning disabilities and suffer from seizures due to brain abnormalities that even my untrained eyes could see.
There Would Be No Cure
We sought other consultations, but it wasn’t until Bethany was 11 months old that we finally received a diagnosis of RTS. 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 once or more a week and with greater severity. Once 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. After months of trying one medicinal cocktail after another, we regained control. She still has seizures every few months, but they are not as severe.
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.
In late July 2012, she developed a severe case of pneumonia. Her doctor ordered her admitted to the hospital. I stayed home with our other children while my wife took her to the hospital.
Before placing Bethany on a respirator, a doctor on duty asked my wife: Given Bethany’s disabilities, did we want her treated aggressively? My wife instructed the doctor to do whatever was necessary to save Bethany’s life. For the next two-and-a-half weeks, she was on a respirator and was given heavy doses of antibiotics and steroids. Finally, after three weeks, we were able to take her home.
Before releasing her, the hospital found that Bethany was not properly swallowing liquids and some foods. This put her at a high risk of breathing the liquids into her lungs, potentially causing aspiration pneumonia. To prevent this, for the next three months, she was hydrated through a nasal tube, and for eight months after that, she could only drink thickened liquids.
Bethany is now back to the condition she was in before contracting pneumonia. Her disabilities are no worse and no better than they were before that time. She is a happy child. She communicates with us through a few signs that she has learned in her own fashion (we say she is signing with an accent), such as “please,” “thank you,” and “more,” and through suggestive gestures. When she wants to watch a baseball game on TV, for instance, she grabs a toy bat and points to the TV. When she wants someone to sit or lie beside her, she pats the surface next to her and points to the person she wants.
We worship at a liturgical church, and Bethany has learned the pattern of the liturgy. She gets excited when she realizes that certain sections of the liturgy are about to occur, particularly the corporate confession, the Gloria, and the doxology. She is very much alive and aware of her surroundings.
Baby Miracle also survived her health crisis. Dr. Dworetz noted that she may suffer from chronic lung disease, but gave no indication that her condition could not be managed. If Miracle is likely to develop any other disabilities — physical, cognitive, communicative, or neurological — Dr. Dworetz did not mention it.
The Right to Decide
Two things in particular struck me as I read the New York Times article and the comments following it.
First, Dr. Dworetz wrote, “Ultimately, parents have the right to decide, but we physicians must help them make informed decisions.” But do parents really have such a right? Neither Miracle nor Bethany was terminally ill, so that any treatment given them would have proved futile. Do parents ever have the right to refuse treatment for their child when there is a prospect that the child can be saved, merely because the child is or may become disabled?
Bethany’s right to life derives from the fact that she is a person made in the image of God. Her right should not be subject to our decision, perhaps influenced by a whisper in the ear from a tempter who offers a way out of the burdens of being parents of a special-needs child or who suggests that the child would be better off dead.
The same goes for doctors. Dr. Dworetz wrote that “On occasion, I’ve offered to make a life-or-death decision for parents. If they agree, they are essentially making the decision, but are shifting the burden to me.” Doctors have no more right to deny lifesaving treatment than do parents. If the child can be saved, there is the duty to try. That the child is or may become disabled doesn’t nullify that duty.
Second, one would expect the heroic and successful efforts to save Miracle to have garnered praise. Instead, a number of commenters condemned them. One poster wrote:
The same problem exists at both ends of the spectrum: the “Miracle Baby” end, and the Terri Schiavo end. . . . Just because we can do something doesn’t mean we should, especially if the end result leaves someone half dead, cognitively crippled, trapped inside a paralyzed body, suspended in a state of dementia — trapped — a living death, a blighted, twilight existence lasting decades, even half-a-century.
One hundred fifty-four people “recommended” this post.
What I found particularly striking, given Bethany’s situation, was the last sentence. God willing, Bethany will live a normal lifespan. During those decades, she will be “cognitively crippled.”
But I would not call that a “living death” or “twilight existence.” Should we not have instructed the doctors to do all they could? Should we have acquiesced to the doctor’s suggestion that we not treat her illness aggressively? That’s what the poster suggests. But to have denied Bethany aggressive treatment would have been nothing less than murder.
Gregory K. Laughlin is Director of the Lucille Stewart Beeson Law Library and Associate Professor of Law at the Cumberland School of Law at Samford University. He and his family are members of Trinity Presbyterian Church in Birmingham, Alabama. The New York Times article cited may be found here. “Worthy of Life” appeared in the January/February 2014 issue of Touchstone: A Magazine of Mere Christianity and has been revised for publication here.