Editor's note: This four-part series originally published in 2000. Third of four parts.
CHAPEL HILL -- The doctors at Vanderbilt University Medical Center assured Susan Williamson that she could be discharged on the Saturday after her Wednesday surgery, and she wanted nothing better than to be home, in Holly Springs.
But Susan felt horrible. Her uterus had been opened so that surgeons could repair the spina bifida lesion on her unborn child - an experimental procedure she endured to give her baby, Anna, an opportunity for a more normal life.
The incision on Susan's belly stretched from pelvic bone to pelvic bone - a big, diabolical smile she would wear forever - and it hurt terribly.
Two days after the surgery, she could scarcely walk. She got out of the hospital bed once on Thursday, twice on Friday, but it wasn't really walking. Susan shuffled, hunched over, carrying her belly like a load of eggs collected in an apron.
Then, on Saturday, when a nurse examined Susan's incision, it didn't appear to be closing correctly. The nurse looked closer to see whether there was any mending at all, and the incision broke open from one end to the other as easily as a souffle.
There was nothing to do but pack it with gauze, through layers of skin and fat, and let it heal that way; suturing or stitching would have sealed in bacteria and triggered a massive infection. Nurses taught Susan's husband, Jason, how to pull out - carefully, slowly - the bloody bandages deep in his wife's wound and pack new ones, twice a day.
The incision kept Susan in the hospital an extra day, but it also pushed everyone's spirits low.
Although they won a discharge on Sunday, making their flight to Raleigh-Durham, the Williamsons arrived physically and emotionally spent. Their first night back, Susan struggled to find comfort amid the pain. Neither of them slept.
Susan's worst moments were when she monitored for contractions, fixing a sensory device the size of a portable CD player to her belly. For an hour, she was forced to sit motionless. Afterward, she hooked the device to a communicator, which fed the data over phone lines to nurses in Tennessee, who read the reports.
Every day, the nurses reported that Susan was registering too many contractions, that she needed to monitor again, that she required additional dosages of the muscle relaxant injected through a pump on her hip. Four contractions an hour. More drugs. Five an hour. They came and came.
Finally, on Thursday, May 25, the nurses urged Susan to get in touch with her local doctors. So Susan dialed Dr. Nancy Chescheir's office in Chapel Hill. The order was clear: Get to the hospital.
Just that day, Jason had gone back to work after missing two weeks. Susan's younger sister, Martha, who had flown in from New Jersey to help out, bustled Susan into the car and sped to UNC Hospitals.
Anna was only 23-and-a-half weeks along and, in the terminology of medical science, nonviable.
Pained, tired and worried, Susan allowed a question that had crossed her mind more than once since she returned from Vanderbilt.
"Oh," Susan thought, "what have we done?"
So much to worry about
Susan was anxious, in part because she hadn't been able to talk with Chescheir, an obstetrician at UNC Hospitals who specialized in high-risk pregnancies. In the few days that the Williamsons had been back from Vanderbilt, they hadn't even had a chance to schedule a visit with Chescheir to become established as her patient.
Now Chescheir was away, so when Susan got to the hospital, she was visited by a number of doctors, many curious about the procedure she'd gone through. The doctors ran tests to make sure Susan wasn't in labor and then pumped her full of a different medicine to calm her uterus.
It crushed her when the doctors said they wanted to keep her overnight, at least, and maybe through the weekend. Her contractions were too frequent, and they lasted for up to a minute each. Aside from the concerns about Anna's prospects, the doctors worried about Susan. If she progressed into labor, her uterus could rupture along the incision. If that happened, she might need an emergency hysterectomy.
"I don't know which comes first, the anxiety or the contractions," she said. "There's so much to be worried about."
Finally, though, the new medicine began to stabilize Susan's contractions, and she was discharged the next day. On her way out, Susan bumped into Chescheir, who offered a beeper number and encouragement to call at any time.
Susan hoped she wouldn't need it, and she and Jason really wished they could finish out the pregnancy seeing local doctors, driving to local hospitals. But after some discussion, the couple decided they needed to settle on one doctor, one with special expertise.
Chescheir had that expertise.
Just months before Anna was diagnosed with spina bifida, Chescheir had begun learning Vanderbilt's fetal surgery. The medical school at UNC-CH aspired to become the fourth hospital in the nation performing the surgery. And so Chescheir was tapped to join a small, elite group of surgeons with the skill.
She was the perfect doctor for the Williamsons.
Honing a specialty
Nancy Chescheir became a doctor almost accidentally. She started out at UNC in 1973, studying to be a marine biologist. Then, to pay her tuition, she got a job scrubbing petri dishes in a lab where scientists were studying brown lung disease. By year's end, she was performing experiments and decided to pursue medical school.
She hadn't exactly built up her resume to that end, though, and was rejected, so she spent another year grooming herself by volunteering in a hospital emergency department and working in cancer research at the Environmental Protection Agency in Research Triangle Park.
In 1978, she was accepted to the medical school at UNC. The summer between her second and third years, she worked in a rural hospital and witnessed a scene that decided her career.
"There were 10 births that summer," Chescheir recalled, "and the doctors made it to only two of them. The eight that they couldn't quite make it to didn't have insurance. And I literally heard, during one of the deliveries, the doctor tell the mother to 'get [her] ass on the table.' And so I became interested in women's health."
She graduated, did her residencies and pursued obstetrics. With the boom in ultrasound and other scanning technologies in the 1980s, Chescheir honed a specialty in fetal diagnosis.
On the staff at the UNC medical school, Chescheir advanced up the administrative ladder, eventually becoming associate dean of curriculum. She also cultivated a devoted following of patients, delivering ordinary babies and extraordinary babies alike. Patients loved her confidence, her candor, her ability to engage in their dramas as a main character, not a distant narrator.
She hung a metal wreath by the door of her office to display all the proud new-parent photographs; it overflowed.
A quest for UNC
By the time Chescheir met the Williamsons, a series of events had converged to bring UNC and Vanderbilt together in a relationship based on mutual need.
For their part, the Vanderbilt surgeons - Drs. Joseph Bruner and Noel Tulipan - were eager to build greater acceptance of their in utero procedure, which was widely regarded as experimental. So they put the word out that they were willing to train other doctors.
UNC, for its part, was establishing the Center for Maternal and Infant Health, and it hoped to offer among its services the highly sensitive, and prestigious, fetal surgery.
Fetal medicine was a burgeoning new market, and many, many medical centers across the country were launching fetal-maternal clinics to offer treatments, not just diagnoses, to pregnant women and their unborn babies.
But of those centers, only three institutions had performed fetal surgery for spina bifida repairs: Vanderbilt, Children's Hospital of Philadelphia and the University of California at San Francisco.
UNC wanted to be among them, and Chescheir wanted to be the surgeon. She stepped down as associate dean of curriculum to become, instead, director of the fetal therapy program. And she went to Vanderbilt to learn the procedure.
But UNC's ambition, fostered by Dr. Valerie Parisi, chairwoman of the Department of Obstetrics and Gynecology, and Dr. Kenneth J. Moise, director of maternal-fetal medicine, was based on much more than mere bragging rights - it was a business decision: North Carolina logs the highest rate of neural tube defects in the country. The surgery offered North Carolinians, people like the Williamsons, a choice between the extremes of abortion and resignation to what nature had dealt.
The whirl of controversy
The university's interest in offering the in utero surgery pushed it, and Chescheir, to the forefront of a heated scientific debate about the controversial procedure.
Had the Williamsons really helped Anna? Or had they ventured into a medical experiment that preyed upon parents' instinctive desire to sacrifice, at any cost, for their child?
Throughout the process of deciding whether to go forward with the surgery, the Williamsons could not point to definitive scientific studies showing that the operation would help Anna.
In the absence of hard data, the Williamsons relied, instead, upon their doctors' advice and their faith.
But scientists demand more than faith. They want evidence. Hard data. So do the heads of medical centers who approve procedures. So do insurance companies that agree to pay.
The time had come to move to the next phase - a national trial that compared conventional spina bifida babies with those who would go through the in utero repair. Such a trial would provide clear evidence of the procedure's value, but it raised a prickly issue. For the sake of science, half of the parents who enrolled in the trial would be denied the operation on their baby's defective spine.
For Bruner, the Vanderbilt surgeon who pioneered the procedure, the push for a national trial was frustrating. It meant that the 90 surgeries he had performed, and the two dozen that had been done in Philadelphia, weren't compelling enough. It meant that the Williamsons and the others were regarded as anecdotes, not true case studies.
"Sometimes I wake up in the middle of the night worrying about the patients who will be randomized to the control group, " Bruner said. "I've looked in these people's eyes, seen the hope in their eyes for their unborn babies and the trust they have in us."
Though the trial process might appear heartless, doctors at UNC-CH, led by Chescheir and Moise, believed a trial was the best route; it seemed like the only way UNC's leadership would approve the procedure, the only way the surgery would be available in North Carolina, the only way it would move beyond the realm of experimental.
While the Williamsons recovered in Holly Springs, the scientists met, discussed, wrangled over how to structure the trial. Bruner supported UNC's participation, but other doctors questioned it, particularly because Chescheir had not performed the surgery independent of Vanderbilt.
Whatever the fallout, whatever the future of UNC's participation, Chescheir said, a trial would help people like Jason and Susan.
"I want to be able to point to the data and tell my patients that they should have this surgery, " she said. "Right now, I can't do that."
A prayer is answered
The Williamsons had had their share of moments wondering whether they'd done the right thing, but by mid-June, the worst seemed behind them.
After three months of constant convalescence, the couple once again began to enjoy the simple, common pleasure of contemplating parenthood.
"We've settled back into that happy, happy feeling that we're having a baby, " Jason said. "I'm much more in tune with Susan's pregnancy than I was before, and I feel a stronger love for Anna, because she's been through so much already."
They made plans for a delivery Sept. 1, a scheduled caesarean section, at UNC Hospitals. Susan finished sewing the bedding for Anna's crib and began quilting a matching blanket. Friends threw a shower. Every night before bed, Jason rested his head on Susan's tummy and read a psalm to Anna.
"I can hear her heartbeat," he said.
"It's amazing to me," Susan said, "I have two hearts beating in my body. Two systems."
The Williamsons drove to UNC twice a month for checkups with Chescheir, and they became addicted to the ultrasound images that pressed a window to their baby's room. They became skilled at seeing her face in the swirl of lines: "There's her cheeks! Look at her chubby cheeks!"
The images brought good news and bad. Anna had a club right foot, a common result of the nerve damage from the spinal column's failure to close, but that would be treatable after birth. And the Williamsons were prepared for such prognoses; they knew Anna would have disabilities.
Besides, something wonderful had happened. Anna's brain had begun to move back into a more normal position - the very promise of the procedure that had drawn Susan and Jason to Vanderbilt in the first place. Without the Chiari II malformation that is common to spina bifida babies, Anna might not need a shunt to drain fluid buildup on her brain.
"This is an answer to prayer," Jason said.
By the end of July, Chescheir proposed a delivery date two weeks earlier than planned: Aug. 15. Anna would be 35 weeks along, just five weeks shy of full term, and her lungs would likely be developed.
For Chescheir, the concern was beginning to shift from Anna to Susan. The doctor worried that labor contractions could easily rupture Susan's uterus; and that, she explained, could be catastrophic. "Susan could die; Anna could die," she said. In one of the Vanderbilt cases, the baby kicked through the uterus, causing massive bleeding. The doctor was emphatic: Under no circumstances should Susan go into labor; better to schedule a C-section early.
Susan was taken aback. Her whole pregnancy had been dedicated to keeping Anna safe inside. Now Chescheir was proposing that she give birth - in two weeks' time.
Susan turned to Jason: "I'm not ready to have this baby," she said. Chescheir agreed to let Susan and Jason think about it; maybe they could come to some middle ground, sometime during the week of Aug. 21.
But time ran out. At 7:15 a.m. on Aug. 12, Susan woke up in terrible pain - maybe it was labor, maybe something worse.