In Utero Surgery Successfully Repairs Baby's Spina Bifida
By Liz Townsend

When unborn children are diagnosed with spina bifida, their parents are usually advised to have an abortion. Many - - probably a large majority - - do. But Mellissa and Kevin Kipfmiller refused to give up on their baby.

They decided to have surgery to repair the condition when the baby was 23 weeks old - - in his mother's womb - - the earliest point in pregnancy such fetal surgery has been performed.

Now, six months after the March 21 surgery and four and one-half months after his birth, little Noah is home with his family in Bay City, Michigan.

Doctors told reporters the only sign of his ordeal may be a slight limp in one leg and scars from the surgery.

"He's a champion," Noah's father Kevin Kipfmiller told the Philadelphia Inquirer. Added his mother, as she kissed her son, " He's getting tired of kisses. But this is just the beginning."

Dr. Scott Adzick, who led Noah's surgical team at The Children's Hospital in Philadelphia, told NRL News that Noah's prognosis is " good." He added that Noah's success will make it possible for more children to receive early in utero treatment for spina bifida, " if the parents are willing to take the risk of fetal surgery" (risks that include premature birth and miscarriage).

Spina bifida occurs when the spinal column fails to fuse properly, leaving a lesion (or opening) that is highly susceptible to infection. Often, there is also a blockage in the brain causing a build-up of spinal fluid, which requires insertion of a shunt to drain the excess fluid.

Surgery is often done soon after birth. Unfortunately, the months spent in utero with the condition untreated can result in leg paralysis, brain damage, or other problems. Occasionally, the build-up of fluid in the brain can result in death soon after birth.

Only two hospitals in the country are currently performing fetal surgery to repair spina bifida: Vanderbilt University Medical Center in Nashville, Tennessee, and Children's Hospital, where Noah's surgery was performed.

The Kipfmillers discovered Noah's condition during an ultrasound exam when Noah was 16 weeks old, according to the Inquirer. Refusing to have an abortion, they consulted a specialist who referred them to Dr. Adzick, director of the Philadelphia hospital's fetal surgery program.

Adzick, who conducted experiments on sheep that showed that early intervention is key to reducing the damage done by spina bifida, offered to perform the surgery at Children's Hospital at 23 weeks into Mellissa's pregnancy, earlier than the operation had ever been performed before. Doctors have been hesitant to operate on very young unborn babies because of the risk that the trauma from the surgery might induce premature labor - - older preemies have much better chances of surviving. However, Adzick theorized that "nerve damage occurs not just from the spinal defect, but because the nerves bump against the uterine wall and are attacked by the amniotic fluid," the Inquirer reported. The less exposure the nerves have to the amniotic fluid, the better the chances of a full recovery.

"This family did not want to end their pregnancy," Adzick said. " They were going to take care of their child, either way, so they decided to give the baby the best possible chances."

Surgeons at Vanderbilt Medical Center have performed the operation seven times, Dr. Joseph Bruner, director of fetal diagnosis and therapy, told the Associated Press. Bruner said five of the seven babies have shown improvement, and the other two have not been born yet.

However, these operations were done when the babies were 28 weeks old, five weeks older than Noah, and their improvements do not seem as dramatic. The benefits of performing the surgery when the baby is younger were clear to Bruner.

"It's obvious to me this is the real thing," he told the Associated Press. "Patients may now have the opportunity of having this surgery earlier in hope of a better outcome and more options."

A team of surgeons performed Noah's operation on March 21. Mellissa's womb was opened, and Noah was turned so the exposed nerves faced the doctors. Neurosurgeon Leslie Sutton then stretched the skin around the opening to cover it, and sewed the skin together.

Doctors also inserted a shunt through the spinal cord to drain any excess spinal fluid out of Noah's body and into the amniotic fluid, preventing build-up in the brain known as hydrocephalus, according to the Inquirer.

Mellissa's womb was then sewn shut. She received drugs to postpone labor for the next six weeks, until Noah was born on May 2.

Noah weighed a "surprisingly robust" two pounds, seven ounces at birth, the Inquirer reported. He stayed in the hospital until July 3, when he weighed four pounds.

Noah faces one more operation to completely close the muscles around the spine, which will be performed in Philadelphia when he weighs 10 pounds.

"This is only one case, so clearly, before we can say anything definitive, we need to show this can work for a broad range of babies," Adzick told the Inquirer. "But when you think of the incidence of this disease . . . this is important. This is pretty neat, and we hope it will be the beginning of something bigger."