Christine and Paul Nugent watched, wide-eyed, as the ultrasound technician pointed to the monitor. “Oh, look at the baby,” Christine remembers the sonographer saying. “How cute.”

Then, abruptly, the technician fell silent. Her expression turned serious. She stared at the image for several long seconds. She said something about cysts on the baby's brain and several times repeated her concern about the baby's hands, which were clearly clenched into tight fists. “We're just going to get the attending physician to take a look at this,” she said.

Christine squeezed her husband's hand in one of hers and clutched a rosary in the other. She was 22 weeks pregnant with what she called an “extremely wanted baby.” She and Paul, both 40, of Huntington, N.Y., had been trying for some time to have their third child, but Christine had miscarried twice in three years.

When the doctor looked at the sono-gram, she saw not only clenched fists and brain cysts but also a problem with the baby's heart — all the indications of trisomy 18, a syndrome associated with the presence of a third No. 18 chromosome. Normally, chromosomes come in 23 pairs. The doctor said the third 18th chromosome would prove fatal for the baby.

“We told her we wanted to keep the baby,” Christine says. “We asked if she would find us a doctor in this hospital who would help us do that.”

Instead, the physician referred the Nugents to a genetics counselor, who told the couple “how horrible” trisomy 18 is.

Christine asked the counselor if the hospital, on New York's Long Island, had any resources for women who want to carry babies with birth defects to term. But the only resources available were for women who wanted to abort such babies.

The young mother felt the hospital was pressuring her to undergo an amniocentesis, ostensibly to confirm the diagnosis. She was afraid the procedure would cause a miscarriage. “The window for you to make your decision is 24 weeks,” the genetics counselor said. Christine recognized the warning as a vague reference to New York State's time limit on legal abortions. “You need to get all the information you need to make your decision.”

The amniocentesis did, indeed, confirm the suspicions. Trisomy 18, also known as Edwards syndrome, affects approximately one out of 3,000 live births, according to the U.S. National Library of Medicine's MEDLINEplus Web site. Multiple abnormalities are associated with the condition; these include mental retardation, bodily deformities and congenital heart disease. Unlike Down syndrome, which is also caused by a chromosomal disorder, most trisomy 18 babies live less than a year. Some, however, live much longer — into their 20s, in some cases.

But because the Nugent baby's problems were compounded by a heart defect, the baby wasn't expected to live more than a week. Part of her heart would be able to pump blood to her lungs, but the underdeveloped left side would not be able to supply the rest of her body.

The diagnosis, confirmed on Good Friday 2002, was the beginning of what Christine called her own “personal passion.” Rather than living in the joyful expectation of a new baby, she faced giving birth to a dying child.

But she was determined to give the baby a fighting chance at life, no matter how brief it might be. A science teacher at a local public middle school, she researched Edwards syndrome. She also worked out contingency plans with her doctors and Huntington Hospital in her hometown, where she scheduled a July 26 delivery by Caesarean section, and discerned whether to sign a “do not resuscitate” order.

She also had to deal with the negativity of those close to her who felt she should have an abortion and get the unfortunate chapter over with.

Fighting for Life

The opposition Christine faced because of her stand for life came not only from the medical community but even from some of her own friends and colleagues. The baby is not going to live, they seemed to be saying, so why have it? Why not end the suffering as soon as you can?

“The medical community lets you think you are the only woman to continue … with a pregnancy like this,” she wrote on an Internet bulletin board, part of a support group for mothers of Trisomy 18 babies. “The pressure to terminate is tremendous.”

“We live in a society where everything is supposed to be perfect,” Christine told the Register. “It's a disposable society. If something is not perfect, you get rid of it and try again. It's like, ‘Better luck next time.’”

“There's definitely a feeling out there that a life like this is not worth pursuing to the end of pregnancy,” says Christine's obstetrician, Dr. John Wagner of Huntington. “I don't know how we've come to this end, but we have. A large portion of the obstetrics community believes these lives are less worthy, in the sense that babies that appear to be normal are, in a sense, more worthy.”

“You can speculate on the reasons as much as I can,” Dr. Wagner adds. “Is it abortion on demand? Even the March of Dimes' healthy-baby program — the March of Dimes does a tremendous amount of good work. But the promotion is based on identifying and eliminating unhealthy babies. Somewhere, we have developed a definition of healthy and, in pursuit of ‘healthy,’ there are babies deemed unhealthy. Their moms are strongly steered toward termination.”

The physician faults his profession for not doing more to help families get through the kind of experience the Nugents had. He says he'd like to see cases like theirs serve as models for prenatal hospice programs. “There is a paucity of data on how to plan, cope and help patients get through these situations,” he says. “There's more data on how to mentally help someone cope with a termination.”

As for Christine, she researched her baby's condition and planned the delivery “to a tee,” according to Dr. Wagner. “It took tremendous dedication on her part.”

“I am looking for support to get me through what I think is going to be the hardest part — the birth and letting go,” Christine wrote on the Internet bulletin board. “There is no easy way to do this, except with God's grace.”

And that is what she and Paul named the baby — Grace. Grace Anne, to be precise.

The Nugents asked their parish priest, Father Steven Berbig, to be at the hospital for the birth so the baby could be baptized as soon as she was born.

“I was in scrubs, ready to be rushed into the delivery room,” says Father Berbig, associate pastor at St. Patrick's in Huntington.

Someone told Christine about the Sisters of Life, the religious community founded by New York's Cardinal John O'Connor to promote the dignity of human life. Sister Mary Doolittle, a former nurse, called Christine frequently and gave her emotional and spiritual support. She also put her in touch with Morning Light Ministry, a Catholic organization in Mississauga, Ontario, helping women through adverse pregnancies.

At home, the Nugents told their children that the family's new baby is sick, and “we are not sure how long we are going to have her.” But their daughters, Anne, 7, and Kathleen, 5, would have a sister, even after her death, Christine explained.

Christine prayed for the strength and grace to love the baby “for whatever time God gives us.”

Two days before the birth, she wrote on the bulletin board: “I am excited to finally meet this little baby who keeps breaking the rules. This baby is going to have a short but powerful life. I wouldn't have changed a thing.”

Every Day Counts

“Powerful” was the word that came to Father Berbig's lips in describing the witness Christine gave in the way she approached the situation. “She was tenacious,” he remembers. “She has a real firm conviction. She invited people into that. She had the support of the medical staff in a very happy and open way.”

The baby seemed to have inherited some of her mother's tenacity. “She was a fighter,” the priest says.

In the first month, Christine visited Grace in the hospital and held her for virtually the entire day. After the baby was discharged from the hospital, Christine and Paul, a New York City fireman, often took her to the park or to visit relatives. Friends and family would come to the Nugents' to hold the little redhead.

As Grace continued to defy the odds simply by surviving another day, she had occasional seizures and sometimes stopped breathing — once for 20 minutes. There was nothing Christine could do but hold her and “love her,” she said. She often “coughed” herself back after not breathing.

“The baby is just beautiful,” Christine said in an interview Sept. 23. “We prayed she'd be pretty. She's sick as hell, but she's my child.” She also prayed that, when the time came, Grace would die peacefully.

That prayer was answered Sept. 26. That day, Grace Ann Nugent died in her mother's arms. Surrounded by family, she stopped breathing and didn't cough her way back. “She looked like she was sleeping,” Christine quietly recalls.

Christine says she now considers herself fortunate for the time she had with her baby. She also says she and Paul weren't the only ones blessed by getting to know and love Grace Anne — it seemed everyone who met her realized what a beautiful and mysterious gift every human life is.

Father Berbig, offering the funeral Mass, quoted Paul Nugent: “People tell us, ‘That was a long hard road you had.’ But we took the easy way. We chose to have the baby and love the baby.”

“They'll never have to wonder ‘what if,’” Father Berbig says of Paul and Christine Nugent. “What would she look like, how would she smell, how long would she live?”

The “other” way — the choice that some felt the Nugents needed to make before the 24th week — might have led to a lifetime of regret. Instead, Paul, Christine, Anne and Kathleen have lots of memories, photographs and a little girl in heaven. And they're surrounded by a few new believers in the sacredness of life.

John Burger is the Register's news editor.