The War against Children with Disabilities

"Dr. Goldberg said, for some couples 'losing a normal pregnancy secondary to the procedure is not as problematic as the birth of a Down syndrome child, so they're willing to take that risk'" — "Screen All Pregnancies for Down Syndrome, Doctors Say" New York Times, January 9, 2007.

"'A very disabled child can mean a disabled family. If life-shortening and deliberate interventions to kill infants were available, they might have an impact on obstetric decision-making,' the college writes in a submission to the Nuffield Council on Bioethics"  — "Allow 'active euthanasia' for disabled babies, doctors urge", The Independent (UK), November 5, 2006.

When I went to nursing school in the 1960s, we were told that we were patient advocates, not doctors' handmaidens or just employees. And we were told that sometimes this advocacy would mean protecting our patients' rights, sometimes even against family members. Children with disabilities were specifically mentioned.

How things have changed!

Now advocacy for our patients is being reworked to even mean participating in ending basic, life-affirming treatment or outright lethal overdoses not only for competent adults but also for children.

I must confess that I was one of those skeptics in 1973 who thought the pro-life movement was absurd in claiming that the legalization of abortion would lead to an increasing acceptance of euthanasia and infanticide. It was one thing to pretend that there was no baby involved in an early abortion (it took me years to discover that Roe vs. Wade legalized abortion virtually throughout an entire pregnancy) but doctors and nurses would never stand for intentionally killing a born human being. Or so I thought.

My wake-up call didn't happen until 1982, when the news broke that the parents of "Baby Doe" in Bloomington, Indiana decided to let their newborn son with Down Syndrome die rather than allow a routine operation to fix his esophagus (food pipe).

Legally, this couldn't happen because we had laws protecting people with disabilities. At least people with disabilities who were already born. Or so I thought.

While some good lawyers were fighting to save Baby Doe's life, I was shocked at the editorials and letters to the editor supporting the parents' "right" to choose treatment (or non-treatment, in this case) for their baby. I read very few letters arguing for poor Baby Doe, even though several couples had come forward with offers to adopt him. As a nurse, I knew that courts routinely ordered life-saving medical care for children when parents refused such care for religious or other reasons. Why was this discrimination being allowed?

Unfortunately, Baby Doe died after nearly a week without food or fluids. Unlike a convicted murderer appealing a death sentence, Baby Doe was not even allowed a simple IV to sustain him while his case was being appealed. Finally, I understood what the pro-lifers meant in 1973.

The Political Becomes Personal

Ironically, a few months after Baby Doe died, I gave birth to my own "Baby Doe". My daughter Karen was born with both Down Syndrome and a very severe heart defect. How much I wished Karen's medical problem had been as easily treatable as Baby Doe's esophagus!

Unlike Baby Doe's parents, my husband and I were determined that our daughter receive the best medical care possible for her heart condition and without bias because she had Down Syndrome. Baby Doe's parents and the court system were wrong, but at least we could make sure that our daughter would have her chance at life. Or so I thought.

The bias against children like Karen soon became apparent. For example, I had to insist that Karen be treated for her heart defect the same way any other child would be treated despite the cardiologist's offer to support me if I refused surgery and just "let" her die.

Next, the surgeon recommended for her heart catheterization was overheard questioning the wisdom of treating "all these little mongoloids". (I refused to let this surgeon near my daughter and I told the referring physician why.) At one point, a doctor sympathetically told us that "people like you shouldn't be saddled with a child like this." (He never explained just what kind of parents he thought should be "saddled" with a child with Down Syndrome!)

Later on, I found out that my trusted pediatrician had even made Karen a "Do Not Resuscitate" behind my back because I "was too emotionally involved with that retarded baby".

Even at the very end, when Karen was apparently dying from a complication of pneumonia, a young resident physician "offered" to pull all her tubes so that she would die as soon as possible.

The final indignity happened at Karen's funeral, when a few well-meaning but woefully misguided people tried to comfort us by saying that "At least it wasn't one of your normal children." (I'm still trying to find out if any of my children — or even I — can be legitimately classified as "normal".)

Better or Worse?

It's been almost 25 years since Baby Doe and my Karen were born. In that time, we have seen some great advances in treating and/or helping children with disabilities, especially Down Syndrome.

People with Down Syndrome now routinely go home with their parents rather than to an institution. And, as columnist George Will, who has a son with Down Syndrome, recently wrote, "Just 25 years ago, the life expectancy of Down Syndrome people was 25. Today, because of better health care, better mental stimulation in schools and homes, and better community acceptance, their life expectancy is 56 years ("Golly, What Did Jon Do? – The Attack on Kids with Down Syndrome" by George Will. Newsweek magazine, Jan. 29, 2007. Available online at http://www.msnbc.msn.com/id/16720750/%20site/newsweek). One geneticist I know refers to Down Syndrome as "the Cadillac of birth defects".

And who among us is not moved by the heartwarming performances of the athletes at the Special Olympics and the human interest stories about the accomplishments of people with special needs like Down Syndrome?

But at the same time, we now have the American College of Obstetricians and Gynecologists recommending that all pregnant women be screened for Down Syndrome even though ACOG has to know that at least 85% of those unborn babies diagnosed with Down Syndrome are aborted. And it seems that every few months a new, "improved" test to detect birth defects is touted in the media.

We have had the Dutch and now even a respected British medical group (see quote at the beginning of this article) endorsing outright euthanasia for so-called "very disabled" babies based on the supposed "benefit" to the child, his or her family and/or society at large.

Apparently, even "very disabled" is a subjective term. Just last year, a controversy erupted in Britain concerning cases of late-term abortions performed on babies who had very treatable problems like cleft palate, clubbed feet, webbed fingers or extra digits — “Babies with club feet aborted” by Lois Rogers. The Sunday Times-Britain, May 28, 2006. (Available online at: http://www.timesonline.co.uk/tol/news/uk/article669212.ece.)

Welcome to the disposable baby.

What Do We Really Want for Our Children?

"What do you want? A boy or a girl?"

"Just as long as he or she is healthy!"

How often have we heard — or even participated — in such an exchange? I know I have. And there's really nothing wrong with wanting good health for our children.

The problem arises when we assume that we have a right to a "perfect" child, even a so-called "designer baby".

In reality, no test can ensure a healthy child before birth. At best, prenatal testing can only identify a few hundred out of thousands of birth defects. And, of course, there is always the issue of mistaken diagnosis, which happens much more frequently than most people realize. And there is no guarantee that any child will be or remain healthy even after birth.

When my Karen was born, I was forced to think long and hard about what I really wanted for each of my children. I discovered that the true bottom line was that I wanted them all to be good people and to get to heaven. Those goals are the most important and, thankfully, achievable for any child. Our role as parents is to do what we can to help our children achieve those goals.

After Karen died, I miscarried another baby and, like many women, I had feelings of failure. And, like many women, I was sometimes unsure about exactly what to say when I was casually asked how many children I had. Luckily, my other children had the innate wisdom to remind me about both the reality of life and the real measure of successful parenthood when they answered "Two up in heaven, three down on earth".