National Catholic Register

Culture of Life

Baby Elizabeth’s Beautiful Bequest

‘Inconvenient’ Doesn’t Equate With ‘Incompatible’

BY MARIA CAULFIELD

May 20-26, 2007 Issue | Posted 5/15/07 at 9:00 AM

 

Imagine this scenario. Joyfully expecting a child, a young wife goes for a regular perinatal visit. After reviewing the results of an ultrasound and a blood test, the doctor tells the mom-to-be that her unborn baby is afflicted with a very serious illness — one that is “incompatible with life.” The physician adds that it’s “very possible” the child will die before being born.

For Mike and Carolyn McGuire of Rockaway, N.J., the scenario is no “what-if” imagining. They lived this very crisis when they were expecting their third child.

The McGuires were first alerted to the possibility of having a baby with a chromosomal illness when Carolyn was in her 12th week of pregnancy.

But even when they discovered that their baby girl had Trisomy 18, a chromosomal anomaly associated with serious physical handicaps and a short lifespan, the McGuires unhesitatingly chose to bring their daughter to term. On the top of her medical forms, Carolyn wrote: “Termination is not an option; we are Catholic.”

On Dec. 20, 2006, a week ahead of her expected arrival, Elizabeth Marie was born by Caesarian section at Morristown Memorial Hospital. She weighed 3 pounds, 11 ounces. She was immediately baptized and confirmed by Father Brendan Murray of their home parish, St. Cecilia in Rockaway, who rushed to the hospital the previous day and spent the night comforting the family.

As the McGuires and many others attest, Elizabeth’s condition was not “incompatible with life.” She was a tiny but beautiful baby and, according to Carolyn, was “feisty, wide-eyed and very alert.” Surprising medical experts, Elizabeth lived three months.

“We knew for a long, long time before her birth that this was going to be a profoundly sick little baby with a disease that some doctors like to say is ‘incompatible with life,’” recalls Carolyn, “But Elizabeth proved them wrong. Trisomy 18 is not incompatible with life and it is wrong to say so.”

Carolyn says that the perinatologist who used the term to describe Elizabeth’s condition ignored the fact that, at the time, her baby had been alive 12 weeks in the womb.

“I believe ‘incompatible with life’ is a term of art,” says Carolyn. “The doctor probably learned that language somewhere along the line in connection with Trisomy 18, as scholarly articles and treatises use the term with Trisomy 18 and also with anencephaly babies. Why don’t they say ‘terminal illness’ instead of ‘incompatible with human life’ or ‘with life’? I think it is to paint a picture to the parents of this gruesome, deformed child to make it easier for them to ‘choose.’ I believe that’s why they say it.”

The term “incompatible with life,” adds Carolyn, is a misnomer. Just look at Elizabeth. “She survived 90 days and might have lived longer, given different medical treatment or circumstances.”

Extraordinary Love

The term “incompatible with life” has become accepted medical jargon for various terminal illnesses. Dr. Robert Saxer, president of the Catholic Medical Association, explains why.

“The term ‘incompatible with life,’” he says, “can be used to describe congenital anomalies diagnosed in the fetus so severe that they would die in the womb or, like an anencephalic baby for example, who is born but will die shortly after being born.”

Meanwhile Dr. Daniel Sulmasy, a Franciscan brother, internal-medicine specialist and head of the Department of Ethics at St. Vincent’s Medical Center in New York City, has a different take on the terminology.

“Trisomy 18 is indeed a severe defect,” he says, noting that it’s associated with more than 100 separate and serious medical problems. But, he says, even though most Trisomy 18 babies die in the first month and almost none survive more than a year, the defect “is not, strictly speaking, ‘incompatible with life.’”

Sulmasy also says that, for a baby with Trisomy 18, “almost any treatment could be considered an extraordinary means of care. If the baby needs a ventilator or intravenous antibiotics or some other treatment like this, this would mean some further complication not genetically related to Trisomy 18 and the burdens could very easily be seen to outweigh the benefits. These babies can and should be fed — even though the small mouth might make this difficult — and kept warm, cuddled and nurtured as any other baby.”

Sulmasy says that, if the child survives birth, he or she should be baptized. He also points out that “God does not demand of us that we do ‘everything.’ Basic human, motherly and fatherly care is required. The child, however gravely ill, is a child of God.”

The Littlest Teacher

When Elizabeth was born, she had myelomeningocele, a type of spina bifida in which the backbone and spinal canal fail to close before birth, causing the spinal cord and its membranes to protrude from the baby’s back. Elizabeth underwent surgery at the Children’s Hospital of Philadelphia to contain the spina bifida. She also had two other surgeries, one to place a shunt in her brain and another to revise the shunt.

“After one month of Elizabeth’s life we did depart from our ‘no heroic efforts’ and no-surgery decision because we knew Elizabeth was feisty enough to be here,” Carolyn says.

She adds that the surgery to treat the spina bifida changed the quality of Elizabeth’s short life. It allowed the baby to lie on her back, sit on a bouncy seat and look out the window.

Most importantly, Mike, Carolyn and other loved ones were able to hold Elizabeth upright or over the shoulder and snuggle her like any baby.

Elizabeth was vulnerable to infection, making it necessary for the McGuires to follow a strict hygiene protocol. Those who entered Elizabeth’s room or the McGuire residence needed to be certain that they were not nursing any viral or bacterial infections. Elizabeth’s condition also required 24-hour nursing assistance.

“This situation affected our entire family life — our marriage, our finances, our health, our ability to raise our two other girls,” Carolyn says before adding that she and Mike are blessed to have a strong marriage and a solid faith in God.

For his part, Mike McGuire learned a few things about the spiritual life. For example, he says, while people can surely find God in life’s trials, “you do not want to have to go searching for God when you are in the midst of a trial in your life. It is better to find him before you need him.”

Into Life Eternal

The birth of Elizabeth brought together a community of neighbors, friends, parishioners and co-workers who volunteered to run errands, take care of household chores, baby-sit the two other McGuire daughters and offer countless prayers. Mike, who is a member of the Knights of Columbus council in Denville, N.J., obtained valuable support from his fellow knights. The night before Elizabeth’s birth, the Knights organized a Rosary. At least 40 families showed up.

Elizabeth passed away on March 19, the feast day of St. Joseph — who, Carolyn points out, is the patron of a happy death. In the little time she had, Elizabeth touched many lives. On the day she died, a priest placed on her crib a package containing her pictures. They had been blessed by Pope Benedict XVI.

In a thank-you letter the McGuires sent their pastor, Msgr. John Hart, the couple listed the many lessons they learned from their daughter’s short life. “Elizabeth’s most important lesson to us all: God makes no mistakes,” they wrote. “Elizabeth is baptized and confirmed. She has eternal life.”

Maria Caulfield writes from

Wallingford, Connecticut.