October 17, 2018
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All life — no matter ability or disability — is worth living

George Danby | BDN
George Danby | BDN

Pregnancy — like life — is full of uncertainties, but discovering that the child you are carrying may be born with disabilities is a poor reason to choose abortion. As someone who was blessed to adopt a little girl who had severe cerebral palsy and was deaf, I know. Yet, aborting children who are diagnosed with disabilities is all too common, and in many parts of Europe an estimated 90 percent of pregnancies are terminated after a prenatal Down syndrome diagnosis.

That is one reason why I am closely following the nomination and upcoming confirmation hearings of Brett Kavanaugh to the U.S. Supreme Court in the hope that more children like my daughter, Ruth, will be protected from abortion. In the coming years, the ability to detect prenatal disabilities will only increase. But once we begin evaluating the worth of human life based on a person’s abilities and disabilities, where will we stop? Who gets to decide which lives are worth living?

My daughter’s cerebral palsy and deafness were caused by an overabundance of bilirubin — the same neurotoxin that causes newborn jaundice. Because Ruth’s injuries occurred after birth, no prenatal test would have diagnosed her disabilities. However, genetic analysis using microarrays and DNA sequencing technologies are able to diagnose hereditary deafness in unborn babies. While such technology can prepare parents to welcome a deaf child, other parents may decide the medical challenges, special education classes and communication differences are not worth the trouble.

In an effort to curb the selective abortion of children with disabilities, some states — such as Utah, North Dakota, Ohio, Indiana and Louisiana — have proposed or enacted laws designed to make it illegal to abort an unborn baby for the sole reason that he or she has Down syndrome. Some, like Indiana’s, have been struck down. But while the battle rages over Roe v. Wade, I believe that a change of heart will do more to protect unborn children than a change of law.

[Opinion: Pro-lifers should focus less on Roe v. Wade and more on changing hearts]

My daughter, Ruth, was born in Uganda, abandoned at birth and placed in a children’s home, which sent her to Maine through a grassroots medical organization for physical therapy. When my family and I met her, she was 18 months old and had the physical abilities of a newborn. She couldn’t sit, use her hands, talk or walk. Yet, she radiated joy. My husband, Dana, and I had often talked of adopting, yet we’d never imagined adopting a child like Ruth. At the time, we had three other children — one the same age as Ruth — yet the more time we spent with Ruth, the more we loved her.

When we learned Ruth was deaf, a neurologist predicted that she’d never advance physically beyond 2 months old. He also said that due to her developmental disability she likely would never know whether we adopted her or not. We adopted Ruth anyway, and believe me, Ruth knew the difference. She learned to communicate — first responding to sign language, then spoken English (after receiving a cochlear implant), then learning to spell using an alphabet printed on an eye-gaze board. Ruth was not only smart, she was funny. She was also loved.

Although Ruth relied on a wheelchair and depended on us for all her physical needs, she lived a full and joyful life. Sadly, shortly before her eighth birthday, Ruth died in her sleep from complications related to her medical condition. We were devastated. Yes, raising Ruth was hard, but the love and joy she brought into our lives was far greater.

[Opinion: It’s time to let Roe go]

Statistics for how many children are aborted each year for reasons related to disability are hard to come by. Such decisions are often made in private. It is estimated that three out of four women who discover they are carrying a child with Down syndrome, a condition that is often tracked, choose abortion. Yet, many families — like my neighbors who are hoping to adopt a foster child with Down syndrome — are courageously welcoming and loving children with disabilities, proving that their lives are worth living.

Several years after Ruth died, I discovered that I was unexpectedly pregnant at age 40, an age when Down syndrome and other chromosomal abnormalities are much more likely. My midwife pressured me to undergo a series of tests to screen for abnormalities in my developing child. I declined. Although I hoped our child would be healthy, I already knew that my family and I would love this child — the same way we’d loved Ruth — no matter what challenges lay ahead.

Meadow Rue Merrill is the author of “Redeeming Ruth: Everything Life Takes, Love Restores,” which won this year’s Maine Literary Award winner for memoir.

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