Hope arrives for parents of babies with spina bifida

Experts are studying what happens when such babies are operated in utero.

THE GAZETTE (COLORADO SPRINGS, COLO.)

COLORADO SPRINGS, Colo. — When Christina Coffey was told her unborn child had spina bifida, she did what many people do when they have questions: She turned to the Internet.

Coffey, 29, discovered a medical study seeking women like her to undergo a rare surgery. The procedure called for the uterus to be removed, the fetus operated on, and everything to be put back in place until birth weeks later. Doctors wanted to know if fetal surgery prevented some of the crippling outcomes of the spinal birth defect.

Coffey called.

Today, she and her husband have a 9-week-old daughter with none of the obvious impairments of babies born with the neural birth defect. Kaylee Grace Coffey, so far, kicks her legs and shows normal reflex responses.

The Coffeys knew the pregnancy drill after having three healthy children, now ages 3, 5, and 7. When Christina learned she was expecting their fourth, doctors’ appointments had become routine.

So routine, in fact, that her husband, Mark, skipped the 19-week ultrasound.

But as she sat there with a gel-covered stomach and the handheld device moved across her to see what was inside, she noticed the doctor kept eyeing the baby’s head area.

She knew something was wrong.

“At first I didn’t want to think about anything or know what it really all meant,” she said. For her husband, “It’s just this kind of heavy feeling that comes down on you ... there’s nothing you can do but just wait.”

When it happens

Spina bifida occurs when the spinal column fails to completely close during the first month of pregnancy, according to the Spina Bifida Association. It is the most frequently occurring permanently disabling birth defect in the United States.

According to the Centers for Disease Control and Prevention, there were nearly 20 cases of spina bifida for every 100,000 live births in 2004.

There are three forms of the defect, including two that cause no or few problems.

A specialist confirmed the Coffeys’ unborn daughter had myelomeningocele spina bifida, in which the nerve fibers and protective coverings come through the spinal opening and are exposed. In its most severe form, the defect results in nerve damage between the brain and lower back. Their daughter’s opening was in the lower back.

The spinal opening could be fixed after birth, the Coffeys were told, but by then permanent loss of bladder control or paralysis might have occurred.

Christina found the Management of Myelomeningocele Study sponsored by the National Institute of Child Health and Human Development.

Sought for study

Doctors with experience in fetal surgery from The Children’s Hospital of Philadelphia, the University of California at San Francisco and Vanderbilt University Medical Center in Nashville were seeking 200 women. Half would receive fetal surgery, half the traditional surgery a few days after birth. They would be randomly chosen for one type of surgery or the other, and then followed for 21⁄2 years or longer.

The purpose: To determine whether children operated on in utero suffered the same disabilities as those operated on as newborns, and whether the results outweighed the risks to moms and babies.

Over the years, doctors have noticed that afflicted babies’ nerve functions seem to worsen throughout pregnancy, according to the study’s Web site, www.spinabifidamoms.com. Sonograms show movement in the legs and feet early in a pregnancy that is not seen later, indicating that damage to the open portion of the spinal cord may occur in that period. Additionally, studies show that the body’s ability to repair damaged nerve tissue is best when people are young.

Christina called. Researchers immediately took interest in her case.

She was told a small percentage of babies don’t survive.

When she agreed, her name was fed into the computer. Dubbed No. 118 in the study, which began in 2003, her surgery would be the next day.

On July 18, their daughter was born at 32 weeks, the purple scar on her back a reminder that this was not the girl’s first encounter with human hands.

In her first weeks, Kaylee Grace was tested at the Children’s Hospital in Denver for possible disabilities, none of which have shown up.