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Surgery strives for small miracles
By WAYNE WASHINGTON © St. Petersburg Times, published January 6, 1999 In their small south Tampa house, a magazine lay open on the coffee table, right to the page where it was being read. A couple of dirty dishes were in the sink, waiting to be washed. Everything was just as they had left it nearly three months before their trip to Nashville. And yet nothing was the same. There was a beautiful baby, with sharp blue eyes and fine hair. There were also fresh memories of an experience as uplifting as it was painful. * * *Doctors at the University of Vanderbilt's Medical Center in Nashville, Tenn., are refining a surgical procedure to correct problems caused by spina bifida, a severe spinal defect that strikes one in 2,000 babies born the United States. The procedure -- which involves temporarily removing a pregnant woman's uterus, surgically repairing the spine of the fetus and returning it to the woman's body -- is as unimaginable as it is rare: Only 29 have been performed since the first one in April 1997. Obstetrician Joseph Bruner and pediatric neurosurgeon Noel Tulipan developed and performed the first spina bifida surgical procedure for a fetus, though other specialists now do similar operations. On Aug. 19, Bruner and Tulipan operated on Karen Lyons and her baby, Mary Anastasia. It was the 11th time Bruner and Tulipan had performed the spina bifida surgery. Karen and Al's experience will be included in a story on the procedure expected to be broadcast on Dateline NBC tonight at 8. "It's been an incredible journey," said Karen's first cousin, Kathy Morgan. That journey started on what was supposed to be one of the happiest days of their lives. * * *A boy? A girl? Karen and Al, like most couples expecting their first baby, were bubbly with curiosity last June when Karen underwent an ultrasound. But the normal, happy chatter quickly gave way. "Everything got real quiet and awkward and scary," said Al Lyons, a counselor at a drug and alcohol treatment center. The technician called in the doctor, who hit the couple with a thunderbolt: the ultrasound indicated their baby had spina bifida. "He started talking about paralysis," Al Lyons said. "We were very devastated." Karen and Al said friends and family, especially Morgan, gave encouragement and support. No one, however, could help them determine what they should do. The new procedure, which Al learned about on the internet, was still experimental. One of the risks for the baby was premature birth, which would add to whatever other problems the baby had. Doctors reminded them that they could choose to abort the pregnancy, but the couple, both Catholics, said that's not an option they considered. To help them figure out what to do, they tried to learn everything they could about the condition. They learned it often leads to poor bladder and bowel control and paralysis because a section of the baby's spinal cord remains undeveloped and, in most cases, is exposed in the mother's womb. Spina bifida is not life-threatening, but it is debilitating. Victims often must use wheelchairs and have little or no use of the lower parts of their body. In addition to spina bifida, Al and Karen also were been told their baby suffered from hydrocephalus, a condition that almost always accompanies spina bifida. Hydrocephalus, characterized by an enlargement of the head because of excess fluid in the brain, often leads to mental retardation. Doctors are not sure exactly what causes spina bifida, but they do believe women who get more folic acid in their diets during pregnancy can reduce the risk of having a baby with spina bifida. Normally, spina bifida is treated with surgery on the baby's spine at birth. Spinal surgery at birth has not been shown to restore any body functions lost because of spina bifida, Bruner said, though it does prevent further neurological damage. To combat the effects of the accompanying hydrocephalus, a valve is usually placed in the baby's head with a tube draining fluid down into its stomach. But the valve, called a shunt, often needs to be cleaned or repaired surgically. Bruner said frequent surgeries is the biggest factor in the declining health of babies born with spina bifida. Bruner said their procedure has shown early promise. "Early results are encouraging, but it would be misleading and scientifically dishonest to say more until they are older," Bruner said. Of the first 24 babies operated on, only nine have needed shunts, Bruner said. That's two-thirds fewer than would ordinarily be the case. The oldest baby is 17 months old, Bruner said, and none is walking so far. Several -- including Mary Anastasia -- are moving their legs. That alone was more than the Lyons hoped for on Aug. 15 when they left Tampa and drove to Nashville. On Aug. 19, Karen underwent the procedure. The procedure and the extensive medical treatment the baby and Karen required afterward cost about $200,000, Karen said, adding that medical insurance covered those bills. Even though the baby needed a shunt, doctors told her parents the procedure went well. They believe the baby will be able to walk, Karen said, but they also think she may need braces to help support her. A week after the surgery, Karen and Al returned to Tampa. But neither was able to spend any time at home. Karen was immediately hospitalized because the procedure sparked early contractions. She remained hospitalized until Sept. 23, when other complications forced doctors to deliver the baby by Caesarean section. Morgan gathered family and friends at her house for a baby shower on Nov. 7, but Karen said her best gift came afterward. Two days earlier, doctors had told the couple they could bring Mary Anastasia home from the hospital after the shower was over.
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AMPA -- It was November already. Summer seemed a lifetime ago for Karen and Al Lyons.
