“Miraculous” Fetal Surgery Shows Babies With Spina Bifida Shouldn’t be Aborted 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 schoolwhich 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.” 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.” [October 3, 2003Hollywood, FL, by Valerie Thompson, LifeNews.com]
Related web sites:
Angeline Marie’s Page – http://www.angelinemarie.com