Cormac Maher, M.D., associate professor of Neurological Surgery, says fetal myelomeningocele repair can result in substantial improvements in quality of life.
Prenatal repair offers new hope for babies with spina bifida
issue 2 | Fall 2012
A prenatal diagnosis of myelomeningocele can be terrifying for expectant parents. But new, delicate neurosurgery -- performed in the womb months before birth — now offers hope for much better outcomes for babies with spina bifida.
C.S. Mott Children's Hospital and Von Voigtlander Women's Hospital is the only health center in the region to offer fetal intervention surgery for myelomeningocele, providing a multi-disciplinary team of experts to provide care for mother and baby before and after surgery.
The surgery, performed at 19-25.6 weeks gestational age, allows the defect to be closed early, preventing further damage to the spinal cord and improving neurologic function. During the surgery, an incision is made in the mother's abdomen and uterus. The fetus' neural tube and layers of the back are then surgically closed.
"This new surgery is the only thing we have been able to offer patients in many decades that is a significant change in treatment," says Marjorie Treadwell, M.D., professor of Obstetrics and Gynecology and director of the Fetal Diagnosis Center at U-M."It has changed how we counsel people with a fetus diagnosed with spina bifida. Extensive research has shown that fetal intervention surgery leads to improvements in level of function and quality of life for the children."
GOOD NEWS FOR MOMS
In a landmark study known as the MOMS study, an NIH-sponsored multi-center clinical trial assessed the best treatment for myelomeningocele: fetal surgery or surgical repair after birth.
According to the study, published in the New England Journal of Medicine, at age 12 months, children who had fetal surgery had a decreased risk of death and less need for shunting when compared to children who received surgery shortly after birth. At 30 months of age, those who received fetal surgery also scored better on mental and motor function tests, had less hindbrain hernation and were more likely to walk independently. However, fetal surgery was also associated with an increased risk of preterm delivery and uterine dehiscence at delivery.
Although fetal surgery improved outcomes, children with spina bifida still require long-term care. Survivors of myelomeningocele frequently suffer lifelong disabilities, including paralysis, bladder and bowel problems, hydrocephalus (excessive fluid pressure in the brain) and cognitive impairments.
George Mychaliska, M.D., and Marjorie Treadwell, M.D., of the Fetal Diagnosis and Treatment Center, were instrumental in bringing fetal intervention surgery for patients with myelomeningocele to U-M.
"We are excited to be able to bring this treatment to this region because for the right patient, this can really be helpful," says Cormac Maher, M.D., associate professor of Neurological Surgery at U-M. "Reducing the need for lifelong shunting and improving the Chiari II malformation can result in substantial improvements in quality of life."
THE RIGHT TEAM FOR THE RIGHT CARE
A multi-disciplinary team from the U-M Fetal Diagnosis and Treatment Center will perform the new surgery, along with counseling for the families. The team's preparation included a visit to Children's Hospital of Philadelphia, one of the sites that conducted the MOMS study. U-M staff have been working for about seven years to build a fetal therapy center and preparing to provide this new intervention for myelomeningocele, says George Mychaliska, M.D., director of U-M's Fetal Diagnosis and Treatment Center.
"This is a huge breakthrough for patients with spina bifida," says Mychaliska, who is also the Robert Bartlett, M.D., Collegiate Professor of Pediatric Surgery. "We have an experienced multi-disciplinary team that is interested in counseling the families. They get the perspective of the neurosurgeon, maternal-fetal medicine and the fetal surgery specialists, along with social work and genetic counseling, all in one integrated setting."
U-M also offers a multi-disciplinary spina bifida clinic to follow patients after they are born. "This is not just about the surgery, but about providing them with social support and long-term ongoing care," says Treadwell.
THE RIGHT PATIENTS FOR THE BEST RESULTS
"The excellent results of the MOMS trial were predicated on choosing the right patients and having an experienced team in place to ensure great outcomes," says Mychaliska. "Most moms come to us with the attitude of 'I'll do anything for my baby.' But we recognize the procedure is not for everyone."
Treadwell said the process begins with careful screening and counseling with the mothers. Evaluation of potential patients for the surgery includes fetal ultrasound, MRI and echocardiography. Genetic counseling and a social work evaluation are also important parts of the screening process. Several members of the medical team contribute to still deeper evaluation.
Prenatal surgery does come with significant risk to the mother. Most women will need C-sections with subsequent pregnancies and pre-term delivery is expected for the fetus that undergoes the surgery.
"I am very much an advocate for mother and fetus. We have to make sure it's the right thing for both of them. But for the right candidate, we believe this surgery can really make a difference for the whole family's future," says Treadwell.