The Miracle Babies
Published: December 11, 2005
Advances in fetal surgery at UCSF’s Fetal Treatment Center save twins in a dire situation
In many ways, having a baby is a lesson in expecting the unexpected. Anna Endter’s lesson started when her doctor looked at the ultrasound screen and pointed to two heartbeats. Later she learned that her identical twins shared a placenta. Then that the placenta had abnormal blood vessels, a life-threatening complication. The problem — called twin-to-twin transfusion syndrome, or TTTS — could cause the babies to suffer heart failure, brain damage or premature birth.
She was referred to UCSF’s Fetal Treatment Center so specialists there could monitor amniotic fluid levels and development, making moment-to-moment decisions about whether to perform fetal surgery. For a long time, she wouldn’t let herself plan, buy baby furniture or clothes. Instead, she took a leave from her job as a lawyer so she could shuttle back and forth from her San Francisco apartment to the treatment center, where a team of about 50 specialists discussed her case every week. She marked the first day of every month by writing on her calendar, “I must make it to 35 weeks.”
She did, with the help of new technology that allowed doctors to thread an instrument no thicker than two pieces of spaghetti through a tiny incision in her abdomen and into her uterus, trace blood vessels from the umbilical cord to the placenta and zap the abnormal veins with a laser. Doctors at the treatment center pioneered fetal surgery about 25 years ago. But in the past five years they’ve been able to perform procedures like this without cutting through the abdominal wall — using an endoscope and operating instruments so small they pose less risk to the babies and the mother.
Advances in ultrasound technology also made it possible for doctors to pinpoint the exact location of the problem. For weeks they watched it, deciding to operate only when images revealed that the babies were having heart trouble.
“Our approach to twin-twin problems is that no one size fits all,” said Dr. Robert Ball, an associate professor of perinatal medicine and genetics who oversaw Endter’s care. “Each case is different.”
And Endter’s case was unusual. “It’s the perfect example of how it’s not always apples and oranges,” said Ball. “This was a kumquat or something.”
No one is sure what causes TTTS to develop in a shared placenta. It’s usually diagnosed when sonograms show fetuses are growing at different rates and have different levels of amniotic fluid. Symptoms, if they develop, can change quickly. Depending on the severity of the problem, doctors might try to reduce the amount of amniotic fluid, deliver the babies early, coagulate the veins with laser surgery or do nothing.
In the Endter case, the problem was harder to catch because the babies differed only slightly in size and amount of amniotic fluid. At first, nothing pointed to a crisis. The Fetal Treatment Center team — composed of specialists in obstetrics, pediatric surgery, neurology, anesthesiology and social workers and nurses — discussed the case at its weekly meetings each Tuesday. Ball met with the Endters to convey the recommendations. The emotional interaction with families who are traveling through the world of fetal complications, he said, “is hard to put into words.”
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