CRESCO — Most parents say they would do anything for their children, but how far would they actually go?
Amie Phillips decided the benefits outweighed the risks when she and her unborn child became the first patients at Mayo Clinic in Rochester, Minn., to undergo surgery to repair spina bifida in the womb.
The procedure — a risky operation both for Phillips, 27, of rural Cresco, and her daughter — involved removing Phillips’ uterus to perform the surgery when she was nearly 26 weeks pregnant, reinserting it, and remaining hospitalized until she delivered her baby 10 weeks later.
“It was really scary,” Phillips said, when told of her daughter’s diagnosis and the complex surgery. “I couldn’t even comprehend all the things that were going on. I broke down and started crying.”
Even as she debated whether or not to undertake the risks until the day of surgery, one thought became the overriding factor.
“I didn’t want to wonder ‘what-if’ forever,” Phillips said.
First performed in 1997 at Vanderbilt University, the prenatal surgery is for myelomeningocele, the most common, and most serious, form of spina bifida, a condition in which the spinal cord is exposed and can result in physical disabilities, including paralysis and other health issues.
One in every 2,000 babies is born with the condition.
“We all know mothers would do anything for their children,” said Dr. Norman Davies, maternal fetal medicine specialist at Mayo Clinic, noting that parents are counseled to be aware of all the potential risks. “Fetal surgery is inherently risky. It’s the mother who takes all of the risks on behalf of her child.”
Davies said anesthesia can pose a problem for some patients, along with other potential surgical complications, such as blood clots and infections. The mothers also must spend the rest of the pregnancy hospitalized, away from work and family.
Before Phillips, the procedure was discussed with five or six other expectant mothers, who did not have the surgery for various reasons, he said.
Pediatric neurosurgeon Dr. Nick Wetjen of Mayo Clinic Children’s Center, said a large incision is made in the mother’s abdomen to bring the uterus outside the body, open it, and expose the back of the baby to repair the defect.
Wetjen, a 2000 graduate of the University of Iowa Carver College of Medicine, said a study showed the in utero surgery decreased by nearly half the need for a shunt, or tube to alleviate hydrocephalus, a buildup of fluid around the brain, compared to babies who undergo the surgery after birth.
Babies who had prenatal surgery in the trial, at Children’s Hospital of Philadelphia; Vanderbilt and the University of California, San Francisco, also were twice as likely to walk without crutches.
Still, the surgery carries a 40 percent chance that the baby could be born premature, Wetjen said. In some cases, the baby would not be viable at that early stage of pregnancy and could die.
When she was 18 weeks pregnant, Phillips had a blood test at her doctor’s office in Decorah, which showed a possibility of spina bifida, followed by an ultrasound that confirmed the condition.
With the diagnosis, some parents choose abortion, something that Phillips and her boyfriend, Dan Gossman, did not consider.
Instead, they researched the outcomes and chose to have the surgery, which was covered under Medicaid.
Roger Munns, spokesman for the Iowa Department of Human Services, said Iowa Medicaid covers medically necessary procedures and services for people eligible for Medicaid. Some of the procedures or services may require prior authorization because of their rarity or cost. Some may not be specifically covered but could be paid for under an exception to policy if there are extenuating circumstances.
Mayo spokesman Brian Kilen said the cost of the procedure is difficult to estimate, as each patient has unique needs that require an individualized care plan.
“It was ultimately her choice, but I let her know I wanted to do it,” said Gossman, 26. “We were hesitant, because there was a risk to her, but we know we’ve done everything we could.”
The couple and their children live with Gossman’s father, but plan to build a home nearby.
Phillips’ son, Brayden, is 9 and their son Ezra is 5. Both were born healthy.
Gossman, who makes air filters at Donaldson Company in Cresco, took care of the boys during the 10 weeks that Phillips was hospitalized at Mayo.
A team of more than 40 medical personnel crowded into the operating room for the May 7 surgery, while Gossman waited outside.
Their daughter, Zeppelin, was born during a planned Caesarean section July 16 at 36 weeks. She was 18 inches long and weighed 5 pounds, 9 ounces.
“She was kicking and screaming when she was born, so they took that as a good sign,” said Phillips, who was two rooms away from her daughter when she heard her first cry. “That was definitely a good feeling.”
A secretary at Chase the Adventure hunting club in Decorah, Phillips has returned to work part-time.
Wetjen, the neurosurgeon, said all spina bifida patients are followed by Mayo for life. While still early to say for certain, he said Zeppelin should be able to walk normally.
At 7-weeks-old, the energetic baby appears to be healthy, but needs to be monitored to ensure she doesn’t develop health problems related to spina bifida, such as hydrocephalus or bladder control issues.
“Right now, everything looks good,” Phillips said. “I’m glad that we did it. It was very crazy and stressful, but it was worth it, definitely.”
- Click here to see an animation that shows how the operation was performed
- Experts say the causes of spina bifida are largely unknown. To decrease the risk of neural tube defects such as spina bifida, doctors encourage women of child-bearing age to take folic acid, a B vitamin found in leafy green vegetables like kale and spinach, orange juice and enriched grains and through dietary supplements.
- Tune in tonight to KCRG-TV9 at 10:00 p.m. to hear more about this report