- The Washington Times - Sunday, May 10, 2009

Nancy Mayer-Whittington remembers it as though it were yesterday; the joy of learning she was pregnant followed by the news that her daughter’s first day of life would be her last.

Nearly 15 years later, she still weeps at the memory of how on the afternoon of Nov. 17, 1994, her gray-eyed daughter Angela lived barely 10 minutes, the victim of Trisomy 18, a fatal genetic defect. Pictures of the dark-haired little girl, robed in a white christening gown, are still scattered about her suburban Maryland home.

She was the first woman her doctor knew who had decided to keep her pregnancy. All his other patients in similar situations had aborted.

“I was so happy I did what I did,” she says of her decision to bring Angela to term. “You get to see your child’s birth and death all collapsed in one time frame. What most people want for their kids is for them to go to heaven. You get to complete that journey with them. As a parent, that is unbelievable. Life is about relationship to God. You know that when you literally pass them from your hands to His.”

Mrs. Mayer-Whittington is part of a growing network of mothers and medical professionals who are providing support groups, medical advice and Web sites for pregnant mothers of children with disabilities. She has written a book, “For the Love of Angela,” about her experiences and co-founded a support group, Isaiah’s Promise (www.isaiahs promise.net).

Trish Stone, a mother who lives in Kensington, was given a copy of that book after she was told in her 20th week that one of her twin boys had hydrocephaly. She was encouraged to undergo a “selective reduction,” a procedure causing the child to die in the womb.

“If you continue this pregnancy, you may compromise your healthy son,” doctors told her. Desperate for support, she sought out Isaiah’s Promise. Twins Mark and Patrick were born a year ago.

As for Mark, “We were told he may not see nor hear, but he sees and hears and claps and makes sounds,” Mrs. Stone says. “He plays with toys. We feel he is doing very well with his cognitive and language skills.”

Few alternatives offered

These parents’ moral dilemmas were rarely publicized until last fall, when then-Republican vice-presidential nominee Alaska Gov. Sarah Palin talked of refusing to abort Trig, her son with Down syndrome.

Congress had just passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act, which provides pregnant women with accurate information about their child’s condition and support services. Signed by President George W. Bush on Oct. 8, it also provided for a national registry of families willing to adopt such children.

It is unclear whether this legislation has had much effect in the typical hospital.

“The medical community has not been aware of alternatives,” says Dr. Byron Calhoun, vice president of the obstetrics and gynecology department at West Virginia University in Charleston. “The only alternative parents are given is termination of pregnancy or they’re told they are on their own.”

He is involved with the perinatal hospice movement, which supports parents of stillborn babies or children expected to die soon after birth. It offers nurses, chaplains, neonatologists, social workers, bereavement counselors and even a photographer to capture brief moments. All the typical hospital needs, he explains, is a few extra rooms for these families.

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