Fetal Spina Bifida Surgery Offers Hope
Little Noah, smaller than the palm of his doctor’s hand, was headed for a life in which he could never walk or control his urine and bowel movements.
After only 20 weeks in his mother’s womb, doctors could see that Noah Kipfmiller’s backbone had not closed. His spinal cord was partially deformed, and nerve bundles protruded from his back.
The only hope was to let doctors operate on the fetus while it remained in the mother’s womb.
That was four months ago. Now 2-month-old Noah is kicking his legs in the air.
For the first time, doctors said, they performed successful fetal surgery on a spina bifida child at 23 weeks into the gestation period.
This one case could pave the way for a normal life for the 1,500 babies born in this country each year with spina bifida, they said.
“It feels good to know my baby can help others,” Mellissa Kipfmiller of Bay City, Mich., said July 2 as she watched Noah, her first child, wiggle his toes. Earlier in the day, she had sat in the hospital nursery watching him do the same thing. “I couldn’t help but compare him to the other babies. And he didn’t seem to be moving any slower than the other ones,” she said. “For some reason, I knew all along this was going to work out.”
Five of the seven babies who have undergone the open-womb operation have survived and have shown improved prognoses. The other two babies have not been delivered yet, said Dr. Joseph Bruner, director of fetal diagnosis and therapy at Vanderbilt University Medical Center in Nashville, Tenn.
But, excluding Noah, those surgeries were conducted significantly later in the pregnancy--at 28 weeks. Conducting the surgery sooner can reduce the chance of spinal damage, he said.
“This has not been scientifically proven to be beneficial, but I’ve seen things come and go, and heard a lot of promises, and it’s obvious to me this is the real thing,” said Bruner, who conducted most of those spina bifida surgeries.
Those options mean parents considering termination could choose to have surgery first in hopes of a good outcome, said Dr. N. Scott Adzick, who conducted Noah’s surgery at The Children’s Hospital of Philadelphia.
One risk that comes with the surgery is premature birth. Noah was born two months premature at 2 pounds, 7 ounces. But he developed well, and now weighs 4 pounds and appears healthy, Adzick said.
Open fetal surgery is still relatively rare and reserved for simple anatomic defects that are life-threatening. But although spina bifida is not life-threatening and many children live normal lives, this case warranted the treatment, Adzick said. “This family did not want to end their pregnancy. They were going to take care of their child either way, so they decided to give the baby the best possible chances,” he said.
As far as Noah’s bladder and bowel control, Adzick won’t know anything for sure until he is potty-trained. When Noah reaches 10 pounds, he will return to Philadelphia to complete the closure of his spine. During the fetal surgery, the skin around the defect was too thin--like tissue paper--to use to completely close the spine.
The Children’s Hospital of Philadelphia and Vanderbilt University Medical Center are the only two facilities that have performed fetal surgery on spina bifida children, said Bruner.
