Editor's note: This popular story from the Daily Briefing's archives was republished on March 7, 2019.
Mary Austin, a pediatric surgeon at Children's Memorial Hermann Hospital, counsels expectant parents on the risks and benefits of an in-utero surgery that can treat spina bifida—and she usually doesn't mention that she has the condition herself, Charlotte Huff reports for STAT News.
About the procedure
Left untreated, spina bifida can lead to disabilities such as incontinence, mobility impairments, and learning difficulties. In the past, doctors treated spina bifida by performing surgery immediately after delivery to repair the gap around the spinal cord of babies affected by the condition.
However, about 15 years ago, a handful of medical centers started operating on affected fetuses in utero. A randomized control trial published in 2011 demonstrated that the earlier intervention could be beneficial. With the old method, about 80 percent of babies who received the surgery eventually had to receive a brain implant to drain fluid that accumulated in the skull. With the newer method, the rate dropped to 40 percent.
Nonetheless, the surgery is not without risks. It can lead to premature birth and does not guarantee that the child won't have physical disabilities. In addition, the surgery requires the expectant mother to stay on bed rest until delivery and carries the risk of complications that could prevent the woman from having more children.
The American College of Obstetricians and Gynecologists recommends that eligible women be educated about the option of the newer surgery.
Dr. Austin's story
Austin was born with a type of spina bifida called myelomeningocele, which affects about 1,500 new babies each year. Austin received surgery to repair the lesion in her spine soon after she was born and "has a relatively limited case," Huff reports.
Nonetheless, Austin still experiences complications from the condition, including urinary tract and kidney infections. As a teenager she had to learn how to catheterize herself; before then, she relied on family and one "close friend to help release her urine," Huff writes.
That friend was one of just a few people who knew about Austin's spina bifida.
Austin's mother, Judy, recalled that Austin "always has been—even with me throughout her life—very closed about her problem. She just absolutely did not want it to interfere in any way with her goals."
One of those goals was becoming a doctor, Huff reports. As Austin advanced toward her goal of becoming a surgeon, she eventually disclosed her condition to a mentor, James O'Neill, a surgeon at Vanderbilt University Medical Center. He noted, "She's such a hard worker—I think she didn't want to get into a position where she might have to give up surgery."
When Austin meets with couples whose fetuses have been diagnosed with spina bifida, she does not disclose her own. She wants parents to look at the data and make their decision based on their circumstances—not on assumptions based on what they see in Austin. "I don't want them to see me as this outcome that they expect their unborn child to have," Austin said, "and then make a decision based on that."
However, her approach is starting to change, Huff reports.
Recalling the sense of isolation she felt when she was younger, feeling like she was the only person her age with the challenges of spina bifida, Austin has started to open up, sharing her story with colleagues and later with a reporter.
Austin wants teens with birth defects to know they aren't alone, and she wants their parents to consult with specialists—even if their children appear to be coping, Huff reports.
She did eventually share her story with a couple whose child has spina bifida and who Austin had operated on.
The couple said the understood why Austin hadn't shared her story earlier. However, the mother, Cassi Young, said Austin should not worry about what would happen if patients learn her story.
"If she would have told us in that room, when we met with her, I think it would have given us hope," she said. "Not so much that (her success) is going to happen to us. It would have just given us more hope" (Huff, STAT News, 6/19).
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