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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.

Crisis & Suggestion

That was Bethany's condition when her most significant health crisis occurred. In late July 2012, she developed a respiratory infection, which developed into a severe case of pneumonia. Her doctor ordered her admitted to the hospital. I stayed home with our other children while my wife took Bethany to the hospital.

Before placing Bethany on a respirator, another doctor on duty asked my wife a question that at first shocked her and then made her angry: given Bethany's disabilities, did we want her treated aggressively? Were Bethany typical, no doctor would have asked that question. In essence, the doctor was suggesting that we should consider letting Bethany die. This is an attitude that many, if not all, parents of a child with significant disabilities face.

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 did a swallow study that showed that Bethany was not properly swallowing liquids and some foods. As a result, she was 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 in July 2012; her disabilities are no worse and no better than they were before that time. She communicates with us through a few signs that she has learned in her own fashion (we say it is her 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.

Whose Rights Denied?

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.

Two things in particular struck me as I read the 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 such that any treatment given them would have proved futile. In both cases, not only was there a prospect for success, but the efforts actually were successful. 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?

My wife and I did not have the moral right to decide that Bethany should not be treated aggressively for her pneumonia. 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, "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." But 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.

Commended or Condemned?

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. Her disabilities, though profound, do not change her essential value as a human being.

There was also a comment from a poster who identified herself as pro-choice, but who recognized the prejudice that lay behind some of the other comments. She wrote:

Before we talk about life and death, let's talk about disabilities and ask the disabled if they think their lives [are] worth living. . . . The problem is the stigma that "anomalies" and "severe" disabilities carry. Talk to disabled people and ask them how they feel about their lives and how it feels to hear that "people like them" should not really be born because the costs are too high and the burden too much for everyone else. Imagine being told—BY OTHERS—how worthy is your own life.

While this poster and I have a profound disagreement on the issue of abortion, we agree on the need to see the disabled as fellow human beings whose lives have great value.

Under Review

Currently, the United Kingdom is reviewing its laws on abortion, which permit abortion after 24 weeks in cases of a diagnosis of fetal abnormalities. Some British leaders are pointing out the discrimination against the disabled inherent in that exception, discrimination that has led to an abortion rate of more than 90 percent for babies diagnosedin utero with Down syndrome. In March 2013, the governor of North Dakota signed a bill banning abortion when the procedure is selected because the baby has been diagnosed with fetal abnormalities.

Attitudes toward the disabled are beginning to change, but, as demonstrated by some of the comments to the New York Times article and by the "choice" offered to us when Bethany contracted pneumonia, more hearts need to be softened. •

The New York Times article cited may be found at www.nytimes.com/2013/08/05/opinion/end-of-life-at-birth.html

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