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.
"Time with the baby is extremely important to these moms," he says. "Families want a live birth, a baptism, a chance to hold the baby; to give as much love a child can have in their brief life."
There are 74 such hospices across the country (plus two in Canada and four in Europe) listed on www.perinatalhospice.org. But there are only three in Virginia, one in Maryland — Howard County General Hospital — and none in the District.
And these are a drop in the bucket when measured against the 3.3 million babies who are stillborn each year worldwide or the nearly 4 million others who die within a month.
Filling in the gap is a corps of women trying to whittle down the current high rates — estimated at 80 percent — of women who abort at-risk children.
They range from Monica Rafie, a Chicago-area mom of five who in 2001 was told her second child, Celine, would likely die of an underdeveloped right heart ventricle, to Anna Lise "Cubby" LaHood, a Silver Spring woman who learned in the spring of 1988 that her unborn son, Francis, would only live briefly outside the womb.
Both women were encouraged to terminate their pregnancies but refused.
Cubby and husband Dan LaHood decided that while their son may die, it would not be at their hands. Reaction was swift; her family disinherited Mrs. LaHood and refused to see the child. The couple transferred their care to Georgetown University Hospital, a Catholic institution that encouraged her to continue her pregnancy.
"The pressure from the medical community to abort was severe," she said.
On Oct. 6, 1988, Francis was born with polycystic kidney disease. He was held by his parents, quickly photographed and baptized before he died a few minutes later.
Today, the LaHoods are lay Missionaries of Charity, the group founded by Mother Teresa, whose photos decorate the walls of their Silver Spring home. On a small $100,000 annual budget, they operate St. Joseph's House, which provides respite and day care for children with severe disabilities.
"People think your life is over when you have a handicapped child," Mr. LaHood says. "It's a cultural view to eliminate them as undesirable. They don't know what the demands are and what the rewards are."
Elsewhere in the world, "they're doing abortions over sex choice and eye color, and it's coming here," he adds. "If you don't defend the most vulnerable life, it's inevitable people will have abortions over preferences."
Misdiagnoses not uncommon
Celine, now 7, survived a condition known as Hypoplastic Right Heart Syndrome, which means only half of her heart is functioning. She is a lively brunette who enjoys Irish dancing.
Her mother is a Catholic who oversees www.benotafraid.net, a Web site that encourages mothers with dire in-utero diagnoses to keep their children. It gets about 3,500 visitors a month.
When pregnant with Celine, "I started going on pregnancy message boards and noticed women talking about terminating once they got a bad amnio report," she says, referring to amniocentesis, the surgical withdrawal of amniotic fluid that reveals genetic disorders.
However, "there is a possibility you can make a wrong diagnosis," Dr. Calhoun says, adding the 5 percent of maternal blood tests for Down syndrome can be "false positives," meaning the child may be at risk but not have the defect.
"If the chromosomal analysis is done badly, people who get the blood work for the risk of Down's may get a positive screening, have an abortion but the baby was normal," he adds.
Now the mother of five, Mrs. Rafie lists common birth defects on her site — ranging from anencephaly, congenital diaphragmatic hernia, Down syndrome, spina bifida, skeletal dysplasia to Trisomy 13 and Trisomy 18 — and stories of families who allowed these handicapped children to be born. She also has four stories under a "misdiagnosed" category of women who resisted the advice of their doctors to abort, only to deliver a healthy child.
She says most women with problem pregnancies quickly become discouraged and overwhelmed. "People hear these callous, insensitive remarks, things like 'Why do you want to carry a baby like this?' or 'Are you religious or something?'" she says. "The genetics counselors uniformly will hand out support information that assumes you'll terminate."
Telling their stories
Some women are fighting back, she says. "They're moms with a holy fire … We feel this is part of our mission. We've been through this and have the credibility."
Among them is Myah Walker, a 23-year-old Canadian from Moncton, New Brunswick, whose daughter, Faith, was born Feb. 19 with anencephaly, or no brain. Her story, posted at http://babyfaithhope.blogspot.com, is replete with Scripture quotes and photos of a tiny girl with a woolen cap on her head.
Because the child coos, cries, sucks milk, can lift her head and reacts to the presence of people, amazed doctors ordered a CT scan to insure that indeed, she is missing much of her brain.
"They have no explanation as to how Faith is even alive and breathing, let alone functioning on a conscious level," Miss Walker wrote. "It may seem like all doom and gloom if you get this diagnosis, but trust me," she added, "there is more hope and joy in store than you could ever imagine."
However on April 21, she removed her e-mail from the blog.
"I have been getting a slew of hate mail recently," she wrote. "I don't understand why these people are attacking me. I don't know how people can be so full of hatred for a mother and her baby."
The popular culture favors abortion, says Madeline Nugent, a Rhode Island Catholic who came across a popular book distributed by many obstetricians to women with dire prenatal diagnoses.
"Except for a couple of pages, the book was all about terminating your pregnancy," she says. Most hospitals encourage the mother to induce the pregnancy at about 20 weeks, causing the pre-viable child to die.
In response, last year she published "My Child, My Gift," a book she is trying to get into the hands of hospitals and geneticists.
"We can deceive ourselves that early induction is the loving thing whereas it's really making things easier for ourselves," she said. "There is an awful lot of pressure and manipulation and withholding of information. Doctors will tell you babies with anencephaly cannot hear, that when they kick in the womb, it's simply reflex movements."
One couple she met were told they had to abort one anencephalic twin to save the life of the other.
"They didn't know they could simply go through the pregnancy and deliver both," she said. "Women in many cases have to fight to continue their pregnancy. If there a severe disability, the medical protocol is to terminate. They think it's better for that child to be dead."
She also operates a Web site, www.mychildmy gift.com. Others, such as www.livingwithtrisomy13.org and www.prenatalpartnersforlife.org, come with photos, music and testimonies from parents who either regret their choice to abort or who brought their pregnancies to term. There is also www.nowilaymedowntosleep.org, a Web site of photographers nationwide willing to show up at all hours to photograph stillborn or soon-to-die babies.
For parents who did abort, Theresa Bonapartis, a Bronx resident, operates www.postabortion help.org under the aegis of Lumina, an organization that helps crisis pregnancies.
"A lot of couples feel such anger and grief because of the pressure put on them," she says. "One woman was told their child would be put in a home and sexually abused if anything happens to them.
"Then there is the clergy who tell them it's OK to have these abortions. It's like a false compassion. Sometimes it's a priest, other times it's a rabbi, but they are not doing people any favors.
"They are told their baby is going to be deformed but when they see the baby, there's been a mistake and the deformity is not bad. One woman told me, 'Everyone told me it was going to be a monster, but it was just a baby girl.'"
The medical community unnecessarily puts pressure on parents to terminate quickly, says Dr. Calhoun, who is also a board member with the American Association of Pro-Life Obstetricians and Gynecologists.
"The mom is not going to die. The baby already has a lethal anomaly, so waiting a few days is fine," he said. "You need to allow the family to process this. The only time it's an issue is if you are approaching 24 weeks, after which a lot of states do not allow terminations. Most of these diagnoses are between 16 to 20 weeks, so you've got plenty of time."
Tracy Winsor, a volunteer in a perinatal support "Elizabeth Ministry" at St. Mark Catholic Church in Huntersville, N.C., is working to form "Serving Our Sisters," a "shotgun blast" of Catholic women nationwide to whom mothers with problem pregnancies can turn.
"Even the pro-life community is unaware of how many people are terminating because of fetal defects," she says. "But there is no research that suggests that terminating a baby saves you any grief. The parents think it will be better if it's over sooner; in fact, they are more likely to have maternal depression and depression issues."
Which is why women like Mrs. Mayer-Whittington encourages women to persevere until the natural birth.
"You recognize everyone has a right to life," she says. "They are entitled to have that life. It's not your choice to end it, it's God's choice."
Isaiah's Promise, which she and Cubby LaHood co-founded 12 years ago, still bring them into contact with couples who agonize over poor prenatal diagnoses.
"We tell them our stories; that this was one of the best experiences of our lives," Mrs. Mayer-Whittington says. "I am happy to walk that path with them. We also say this is the toughest thing you'll do and we do not sugarcoat this."