Life over death

Kim Illion says it took her four months to grasp that Cole, her unborn son, had been diagnosed with hydrocephalus-water on the brain-at 20 weeks. "I cried every single day," said the mother from Iselin, N.J. "I didn't want to have a baby shower. I didn't want to decorate the room, because I thought that I was bringing home a baby-if I was even bringing home a baby-who was going to die."

Every day, parents like Illion and her husband hear dire news couched in clinical terms like "incompatible with life," "no quality of life," and "termination of pregnancy." Many mothers abort but some don't, not knowing whether their children will lead fairly normal lives, live with serious illnesses, or die soon after birth. Despite the uncertainty and fear, these mothers often have no regrets that they chose life for their children, no matter how brief. Here are the stories of five who continued their pregnancies despite medical advice to the contrary.

Almost every doctor the Illions saw pressured them to abort. Doctors said their son would be a vegetable, disfigured, never talk or walk, on a respirator. Doctors even called the Illions selfish for refusing to abort or, as they put it, "explore other options."

The Illions spotted a glimmer of hope when a neurosurgeon told them that there was no reason why Cole wouldn't lead a normal life. In the end, Kim Illion says, "He was born, and he was perfect." Cole went through brain surgery at 1 day old and has had 12 surgeries since.

Today, Cole is a healthy and happy 5-year-old. "Even when he's in the hospital getting surgery he smiles when he wakes up. You look at him smile and everything is ok," Illion said. Although he lags behind in areas like speech and potty training, he is otherwise a normal child. The Illions later started an organization, Hydrocephalus Kids, to raise awareness of the disease.

Mary Mabeus, a Severna Park, Md., mother of three, was 18 weeks pregnant when her baby was diagnosed with Mosaic Trisomy 13, an extra chromosome in some cells. "I remember asking, 'So am I going to have a special needs child?' and the doctor said, 'No, you don't understand. This child is incompatible with life. There is no hope.'" He put her on the phone with an abortion clinic, which rejected her insurance, so the doctor began asking about other forms of payment. "It was almost like he was bargaining for my son's life," she said.

But terminating her pregnancy was, in Mabeus' mind, not an option: "I had already felt him move. This was my baby."

When Samuel Mabeus was born in 2006, Mary Mabeus insisted on "complete aggressive care." Samuel struggled to breathe at first and spent a month in intensive care, but doctors could find no sign of the genetic disorder. At 18 months, doctors still couldn't find any signs of the Trisomy 13. Yet at 19 months Samuel contracted a virus, spiked a temperature of 106, and died.

"We lived a lifetime in his 19 and a half months," Mabeus said. "What seems to be so imperfect in the eyes of everyone else is what ends up being the most perfect. He was the most perfect little soul that I'll ever know in my lifetime."

JoAnne Cascia's baby Gabriel was diagnosed at 20 weeks of gestation with Thanatophoric Skeletal Dysplasia, a lethal form of dwarfism that affects the ribs, making them too small for lung development. The doctor advised Cascia to abort, and when the Metuchen, N.J., mother called a clinic, the counselor told her that because it was so late in the pregnancy the baby would "not be intact" after removal. In other words, he would be taken out in pieces.

"When I heard that, I just about dropped the phone. I thought, 'I just can't believe people choose to do this to a baby!'" At that moment she realized: "I'm his mother. My job is to protect him."

Cascia's doctor dropped her case: "I went four weeks without having a doctor at all because nobody wanted to touch me." She eventually found a medical group at St. Peter's, a Catholic hospital that specialized in high-risk pregnancies.

Cascia gave birth to Gabriel on Feb. 24, 2004. He lived for 90 minutes. Hospital staff gave out wristbands for easy access and brought in muffins and coffee to ensure that her 35 family members and friends could spend as much time as possible with him.

The Cascias brought Gabriel an outfit and had him baptized in the hospital room. "It's odd," Cascia said, looking back on the day. "It wasn't a morning filled with grief and mourning and tears. The sadness came later. Everyone was feeling blessed that they even had an hour and a half with him."

Monica Rafie, a native Chicagoan, came across an online discussion thread called "Termination Due To Illness" during her second pregnancy. It was filled with heart-breaking stories.

Only a few months later, in June 2001, Rafie sat in a doctor's office, struggling to deal with the diagnosis that her unborn child, a girl already named Celine, had Hypoplastic Left Heart Syndrome: Only the left side of the heart was forming.

Rafie thought back to the women on the message boards. "I felt in my own mind these words: 'Now you will walk the walk.'" She dismissed abortion: "Even if my baby were not going to survive, I would want to spend whatever time I could with her and meet her at the end."

But a specialist soon discovered that Celine had been misdiagnosed; she had Right Heart syndrome, a condition that offered slightly higher chances of life.

The family chose aggressive care to try to extend her life. "I thought that it was our responsibility as her parents to try to take the course of treatment that could extend her life," Rafie said. "We thought she would want to live."

Celine underwent three surgeries-at 6 days, 9 months, and 18 months-to "replumb her heart," ensuring that it could function on one ventricle. Now 8 years old, she lives her life "full speed ahead."

Rafie had already been active in the pro-life community. In 2002, she launched benotafraid.net, a website that offers encouragement and resources to parents who are faced with a serious prenatal diagnosis.

Liz Ledoux of Farmington, N.H., learned of her baby's medical condition at 26 weeks, when doctors told her that baby Cynthia had Exencephaly-her brain was forming outside of her skull. The doctor pressured her to terminate and said that her daughter would "look like a frog."

"It was not my choice to make," she said. "We knew that the condition she had was not 'compatible with life.' But in my mind, it was up to God when she returned to Him."

Cynthia, born on Dec. 5, 2009, died that day after living for 90 minutes. "My daughter did not look like a frog," Ledoux said. "She was beautiful . . . the smile, and the perfect little fingers, and the perfect little toes. . . . Was it difficult? Absolutely. But I don't regret it. I had-in my eyes-one of the most beautiful babies in my arms for an hour and a half."

-Cody Holt is student at Patrick Henry College