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‘Inconvenient’ Doesn’t Equate With ‘Incompatible’
BY MARIA CAULFIELD
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.”
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
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.
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