"Miraculous" Fetal Surgery Shows Babies With Spina Bifida Shouldn't be Aborted
by Valerie Thompson
LifeNews.com Staff Writer
October 3, 2003
Hollywood,
FL (LifeNews.com) -- Three-year-old Angeline Marie is spending some
time in "the thinking chair" this week at preschool and her
mother couldn't be prouder.
"She getting a time-out now at school—which
is something we never thought we'd have to worry about," says her
mother Emily Gonzalez-Abreu.
Angeline Marie was diagnosed with spina bifida when Gonzalez-Abreu was
16 weeks pregnant. When the perinatologist gave Abreu and her husband
the news, "He said, ‘you do not want to have this child…she's going
to be like a vegetable.' "
With spina bifida, which the Spina Bifida Association of America estimates
affects about one in 1,000 babies, the spine does not close properly
when it should, at about 28 days after conception. The nerves are damaged,
then, as the pregnancy continues, the amniotic fluid in the uterus eats
away at the spinal cord, adding more nerve damage. In Angeline's case,
the lesion was high in her spine and her chances of even breathing on
her own were bad.
For the Abreus, who had waited six years for a baby, abortion wasn't
an option. Just before Angeline's spina bifida was discovered, her father
had seen a television program on the fetal surgery being performed on
babies at Vanderbilt University Medical Center in Nashville, Tenn.
Their physician put the family in touch with
the surgeons at Vanderbilt and, at 28 weeks, the surgery to close the
spine was performed. The doctor who originally advised aborting Angeline
Marie "is just marveled by her." He gives other parents who
face the same discovery the Abreus' telephone number, Gonzalez-Abreu
said.
"I like Angeline as a witness. Women are still choosing abortion,
a lot of them," the little girl's mother said.
At 3 years old, Angeline is swimming, walking
with little braces, talking a blue streak and singing. Cognitively she
tests above average and she is so social, her mother says that when
they were at the doctors' office recently Abreu-Gonzalez turned around
and her daughter had persuaded a lady in the waiting room to read her
a story!
The number of parents choosing to abort because of spina bifida is not
known, but a 1996 report by the federal Centers for Disease Control
found that during 1985-1994 selective abortion of children diagnosed
with spina bifida was between 20 to 30 percent in five of six states
surveyed. Many doctors say the incidence is much higher.
Legislative initiatives are underway to assist the approximately 70,000
Americans and their families who live with spina bifida.
In September, pro-life Reps. Chris Smith (R-NJ) and Bart Stupak (D-MI), along with more than 20 other congressional representatives, formed the Congressional Spina Bifida Caucus.
In fiscal 2003, $2 million was appropriated to
establish the National Spina Bifida Program at the Centers for Disease
Control and Prevention. Smith is working to get another $1 million appropriated.
And with the assistance of the Spina Bifida Association of America and
the Spina Bifida Foundation, a research summit was held in Washington,
D.C. in May.
The CDC recommended in 1992 that all women of child-bearing age take
400 mcg of folic acid daily, because researchers estimate that step
would cause the incidence of the neural tube defect to decrease by as
much as 75 percent.
For those families faced with a baby with spina bifida though, the fetal
surgery is nothing short of miraculous, Emily Gonzalez Abreu says. About
225 surgeries have been performed worldwide since 1997.
There remains controversy in the medical community because the surgery is risky for mother and baby and does not cure spina bifida. A $25 million, five-year trial of 200 patients sponsored by the National Institutes of Health, which just began, is expected provide hard data.
University of California, San Francisco, and
Children's Hospital of Philadelphia, as well as Vanderbilt, are participating
in the randomized trial in which half the children will be operated
on during pregnancy and half after birth. The three institutions are
responsible for most of the 225 procedures performed worldwide, with
Vanderbilt responsible for 176 prior to the trials.
"The study is needed, not only to demonstrate the significant and
long-term benefit of spina bifida repair, but to validate the entire
field of maternal-fetal surgery," said Dr. Joseph P. Bruner, associate
professor of Obstetrics and Gynecology and director of Fetal Diagnosis
and Therapy at Vanderbilt.
At Vanderbilt, the procedure is performed by
Bruner and Dr. Noel B. Tulipan, professor of Neurological Surgery and
director of Pediatric Neurosurgery.
"There has never been a trial that has demonstrated the efficacy
of fetal surgery. If our short-term data holds up, this will be the
first trial that justifies the entire enterprise," Bruner said.
"It will extend beyond fetal surgery for spina bifida. It will
grant legitimacy to the entire subspecialty."
In the surgery, the doctors do a Caesarean section, pulling the uterus
out, making an incision in uterus over the baby and then repair the
spinal lesion, sew up the incisions and the mother continues her pregnancy.
The babies are usually born prematurely. In earlier days, children born
with spina bifida usually died; then later, surgery to close the opening
was performed shortly after birth and this remains common medical practice
today. The fetal surgery is still considered experimental.
Spina bifida commonly causes paralysis or weakness of the legs, bowel
and bladder incontinence, neurological impairments and learning disabilities.
Nearly all children born with spina bifida must undergo surgery after
birth to implant permanent shunts to remove excess liquid from the brain
that would cause brain damage although those who have undergone the
surgery have half the chance of requiring the shunts. The other problems
seem to remain.
Angeline does require a shunt and had five surgeries because of infections in the shunt before she was a year old, her mother said. She also wears little braces to walk.
Nevertheless, Angeline's busy toddler life is a testimony to the success of the surgery, Gonzalez-Abreu says: "Look at Angeline's life. If she had not had this surgery, she would be in a wheel chair. This is a miracle."
Related web sites:
Angeline Marie's Page - http://www.angelinemarie.com



