Network Being Formed to Help Parents Whose Unborn Babies are Ill

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Like any expectant parents, Alessandra and Clayton Rose of Bedford were devastated to learn that their unborn daughter had Trisomy 13, a serious and often fatal genetic defect. But one thing was decided early, Mrs. Rose said: She would not have an abortion. She would continue her pregnancy and give her child life.

The advice of the medical community runs very much the other way.

“It was, of course, ‘You should terminate, everybody terminates,’ ” Mrs. Rose recalled. She and her husband stood firm, in part because of the two sons they already had, who were then 5 and 7.

“I wanted this baby to have an opportunity at life, and I wanted my boys to have an opportunity to love her,” Mrs. Rose said. She added, “I didn’t want the boys to think, ‘She’s not perfect so we’re not going to keep her.’ What kind of a message is that?”

The Roses named their unborn daughter Marguerite and called her Maggie. She was born June 28, 2005, and lived for four hours.

“She was an absolute gift…She was such an incredible little person,” Mrs. Rose said. “This baby gave rise to so much goodness...Afterward our hearts were broken, but there was so much peace… It was bittersweet, but the sweet was just as potent as the bitter.”

The Roses, however, were on a lonely road in the days following their unborn baby’s diagnosis.

“There was nobody to talk with,” Mrs. Rose said. The couple, who had another daughter five years ago, are parishioners at St. Patrick’s in Bedford and had support from the parish. But many couples who receive tragic news about their unborn baby face what the Roses faced: the medical community recommends abortion but makes no provision for parents who want to continue the pregnancy.

At the direction of Cardinal-designate Dolan, the Archdiocesan Pro-Life Commission is forming a network of health care providers and others to assist parents who have received an adverse prenatal diagnosis. The team will include obstetricians, perinatologists, pediatricians, social workers, chaplains and psychologists, as well as parents who have had the same experience or are raising a child with a disability.

Dr. Elvira Parravicini is a neonatologist at New York-Presbyterian Hospital and assistant professor of clinical pediatrics at Columbia University. She told CNY that promoting abortion violates a mother’s natural inclination.

“A mother, by nature…is the one who loves her baby,” and so does the father, Dr. Parravicini said. “It is so unnatural to do anything that would harm the baby. The vast majority of the time, they just need support.”

She added, “Our call as physicians is not to eliminate the patient, but to provide whatever care the patient requires.” That can mean a cure, or treatment that will prolong life, or supportive care for however long the patient lives, whether “for 70 years or seven minutes,” she said.

Dr. Robert Scanlon, chief of obstetrics at Huntington Hospital and a faculty member at Hofstra School of Medicine, said that parents who receive an adverse prenatal diagnosis must cope not only with heartrending news, but also with unfamiliar medical terminology.

“There’s a need for somebody to bridge the gap between the diagnosis and the patient,” he said. “A network like this would also offer the opportunity for a second opinion, another viewpoint of what’s going on.”

He remarked that while parents in such a situation will be told exactly how to arrange for an abortion, there is “no road map” for those who choose to continue the pregnancy. With information and referrals, the network will be able to “illuminate that path of carrying the baby to term,” he said.

For example, when a woman finds that she is carrying a Down syndrome child, the network will be able to make sure she understands the diagnosis, then quickly put her in touch with parents raising a Down syndrome child. “As mother-to-mother, they can ask questions and get answers at a deeper level,” Dr. Scanlon said.

There are benefits for parents who decide to give their babies life.

“Our experience has shown us that women who carry their children to term find themselves with no guilt,” he said. “They have a story to tell; they don’t have a secret to hide. It seems it brings them to a better place.”

Alessandra and Clayton Rose, whose infant daughter Maggie lived just four hours, founded the Maggie Rose Perinatal Bereavement Program, which is administered by The Bereavement Center of Westchester. Though not related to the network planned by the archdiocese, it performs a similar service: assisting parents who have had an adverse prenatal diagnosis or who have lost a pregnancy or an infant at any stage.

Christine Nugent of Long Island is a pioneer in helping parents with an ill unborn child. Her daughter Grace Anne was diagnosed before birth with Trisomy 18, a rare and fatal genetic defect. Medical personnel advised abortion. She and her husband, Paul, refused, but “We were on our own…There was no network,” she told CNY.

She added, “I had to fight and fight and fight…I said, ‘She’s my daughter, she’s got value and you will take care of her.”

A friend put her in touch with the Sisters of Life.

“That was the first thing that made me say, ‘I’m not alone,’ ” Mrs. Nugent said. She also met a grief counselor who helped arrange for perinatal hospice care.

She scorns the notion that a baby who will die soon might as well be aborted. “What if one of my daughters came down with leukemia when she was 7 years old? I wouldn’t shoot her in the backyard to get it over with,” she said.

Grace Anne Nugent was born July 26, 2002, and lived for exactly two months.

“I got to see what color hair and eyes she had,” Mrs. Nugent said. “I got to hold her and be a mother to her for two months. I shared her with a million family members and friends…I crammed in a lifetime of memories in that time we had.

“There was tremendous joy to be had.”

She put together a Web site that tells Grace Anne’s story: graceannenugent.netfirms.com. It includes a long list of resources for other parents facing similar challenges.

Mrs. Nugent welcomed the news of the network that the archdiocese is forming.

“This is groundbreaking,” she said. “It’s what I wish I got.”

The names of those serving on the network will be kept confidential. Referrals will be coordinated through the archdiocesan Family Life/Respect Life Office and the Gianna Catholic Healthcare Center for Women. Dr. Anne Nolte of the Gianna Center is chair of the Pro-Life Commission’s Medical Committee, which is assembling the network.

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