Health Care

A chance for Anna, part four: The conclusion

Editor's note: This four-part series originally published in 2000. Last of four parts.

CHAPEL HILL -- When Nancy Chescheir's pager went off on that Saturday morning, she suspected who was calling. Just the day before, she had seen Susan and Jason Williamson in her office for Susan's regular checkup. She had encouraged them, once again, to consider moving up the delivery date for their baby, Anna.

Chescheir specialized in high-risk pregnancies, but even by her standards, Susan's case was extraordinary. Twelve weeks earlier, Susan's womb had been cut open in a radical procedure at Vanderbilt University Medical Center to mend the spina bifida lesion on Anna. Chescheir had been there in the operating room; she knew that, even after 12 weeks of healing, the 3-inch incision in Susan's uterus could rupture.

If everything had gone according to plan, Chescheir would have scheduled a routine Caesarean section in two weeks, at Susan's 37th week of pregnancy, and spared Susan any threat of labor or any other complication.

Now Anna was forcing decisions for everyone.

Shortly after 9 a.m. on Saturday, Aug. 12, Chescheir arrived at the front entrance to the hospital. The Williamsons had just pulled up, and Jason handed off his keys to Susan's mom, who followed with Susan's younger sister in the car behind them. Jason commandeered an unoccupied wheelchair for Susan.

Susan's labor had come on surprisingly strong and fast, particularly for a first baby, and this alarmed Chescheir.

Right there in the hospital lobby, Chescheir pressed her hands to Susan's belly, gauging the tension of the contractions, searching for Anna's position in the womb, feeling for any signs that Susan's uterus had broken open. She was relieved that Susan wasn't bleeding, and she also quickly determined that this was not a false alarm.

"I think we're going to have a baby today," Chescheir said.

Together, Chescheir and the Williamsons hurried to the elevators and the fourth floor.

Susan and Jason settled into a small recovery room within 10 steps of the nurses' station.

Chescheir kept up a light banter. She didn't want to worry Susan and Jason, who had persevered through a difficult three months with Susan on bed rest, trying to keep Anna from being born prematurely.

Now, with the baby only five weeks early, the concerns about Anna's health had greatly diminished; Anna's lungs had likely finished maturing, so she was no longer in danger from the worst of the complications of prematurity.

Still, Chescheir wanted to rule out other trauma, so a nurse strapped a fetal heart-rate monitor around Susan's belly to make sure Anna's heartbeat was strong.

The doctor remained tense, however, about Susan's well-being. Unlike a regular C-section that cut at the bottom of the uterus, the incision Vanderbilt doctors made had been at the top, where the uterus is muscular. That muscle could only endure so much stress and strain during labor before tearing, and a tear could result in a massive hemorrhage - a catastrophe.

"It's why we fear it as much as we do," Chescheir said.

At least one of the 90 mothers who had undergone the in utero surgery at Vanderbilt could have died when her baby kicked through the uterus incision during labor. The mother and baby were saved, but it was a frightening reminder of the surgery's risks.

Chescheir hurried to get the operating room set up for Susan's emergency Caesarean section and an operating room team in place.

"I had felt a little disappointed that I wasn't going to be able to know what labor was, so I guess I should be grateful for this," Susan told her mother, Joyce McNeil. Joyce and Martha Raterman, Susan's sister, had arrived the day before from Richmond to wash baby clothes. Now their timing delighted them.

"Are you scared?" Martha asked.

"No," Susan said, "I'm really relieved."

Shortly after 10 a.m. a nurse came in and announced that everyone was ready. She unhooked Susan from the monitor and steered her bed toward the door.

"OK, lovie," Jason said, following her out the door toward a changing room, where he'd put on his set of sterile operating scrubs.

"I'll see you in a little while," Susan replied.

Saving fragile newborns

Susan watched as people buzzed around her. Everyone in the room wore green from head to toe. Even their gloves were green, made of a special nonlatex material, because babies like Anna, exposed to so many medical procedures, quickly develop allergies to latex.

This operation, unlike the one at Vanderbilt, would be performed with Susan awake, numbed only with a spinal block. She asked the nurses if they would let her see Anna before taking the baby to the neonatal intensive-care unit.

The best she could secure was a maybe - if Anna seemed to be all right.

That was more than the nurses usually offered. Spina bifida babies typically need immediate medical intervention, and the nurses were accustomed to whisking the baby to intensive care, wrapping the cyst - about the size of a tangerine - in sterile bandages to protect from infection, and hooking up intravenous lines for antibiotics.

Within hours, the babies would be scheduled for surgery to repair the defect. The resulting wound would require such special attention that, upon discharge from the hospital, the babies had to be driven home in a special car seat that strapped them in on their stomachs.

What's more, because the lesion caused their brains to grow abnormally, most of the babies would require an accompanying brain surgery to implant a shunt to drain fluid that had built up. Also, their bladders might not function well, requiring the insertion of a catheter to avoid dangerous kidney swelling or, worse, kidney failure.

Even in the best of cases, they were certain to spend the first days, even weeks, in the sterile institution of the hospital neonatal unit.

But Anna was no regular spina bifida baby. The nurses understood that Anna's lesion had already been closed while she was still developing in Susan's womb, but no one could predict how successfully that procedure had gone.

Anna was a mystery.

Technicians shrouded Susan in blue sheets, erecting a screen to shield her from viewing her belly, which was framed in an oval window of clear plastic.

Jason stood at Susan's head. He is tall and could easily see over the sheeting. Jason clutched his camera and watched intently as the nurses set up a newborn cart for Anna.

Chescheir stood at Susan's feet, her arms crossed, waiting for the spinal block to kick in and numb Susan's belly. Finally, at 10:50 a.m., Chescheir walked to Susan's left side and examined the work before her, pressing Susan's belly as an artist might test new clay.

"You know," Chescheir said to Susan as she reached for a scalpel, "I've seen this baby before. This is my second meeting with Anna."

Indelicate work

Chescheir had assisted during Susan's operation at Vanderbilt. She hoped, if the political winds blew right, to begin performing the same procedure at UNC Hospitals this fall, making the university one of four in the country to offer the risky repair.

For the doctor, Susan was as much a patient as a case study, and Chescheir was curious to see how well the procedure had held up. She cut along the same surface incision the Vanderbilt doctors made, from pelvic bone to pelvic bone, snipping off scar tissue as she went.

The work of a C-section is indelicate, and the physical strain of pulling through layers of tissue - skin, fat and muscle - had not come easily to Chescheir; one of her teachers in medical school had advised her to squeeze a tennis ball to build upper body strength.

"The fluid in your abdomen is clear," Chescheir said, "and that's good. No sign of rupture."

More cutting. More pulling.

"We're at your uterus," nurse Rebecca Wright said.

"Your uterus is beautiful," Chescheir said. It was intact, but as Chescheir explored further, feeling the old Vanderbilt incision with her fingers, she realized it had grown thin. Susan, she noted to herself, must never go into labor if she were to become pregnant again. And that was only one complication that faced Susan in the future. If she were to become pregnant again, she had a 3-in-100 chance of having another spina bifida baby. She would also run a 1-in-10 chance of the placenta's implanting improperly as a result of the scar tissue on her uterus.

Those had not been easy issues for Susan and Jason, who had long yearned for four children. But they had come to realize that they could not wager the future, mere dreams, against sure things. Anna was sure. And she was here.

Eleven o'clock, and Chescheir cut into Susan's uterus with a swift, even incision, and then she put her tools aside. One of the neonatal nurses moved into place behind the doctor, holding a white cotton baby blanket in her outstretched arms, as if Anna would drop from the heavens.

For a moment, the doctor's green-gloved hands disappeared inside Susan's belly, and then Chescheir brought forth Anna's head. It stuck out, neck high, as if someone had surprised her in a bubble bath. A halo of black hair encircled her head. She kept her little eyes squeezed shut. Her cheeks puffed.

"Hi, sweetie," Chescheir said. "Anna! You do have chubby cheeks."

A nurse acted quickly to suction blood, mucus and amniotic fluid from Anna's nose and mouth. Chescheir dipped into the incision once more and plucked Anna fully from Susan's womb, lifting her gently, trailing the umbilical cord. Anna shivered in the cold, her knees bent to her chest, and she let out a bleat.

"Ohhhhh," Susan cooed.

"I guess her lungs work," Jason said.

11:02 a.m., Aug. 12, 2000, Anna Fisher Williamson was born, 5 pounds, 14 ounces.

"How does she look?" Susan asked, shielded by the sheet.

"She's beautiful," Chescheir said.

The hardships seem distant

Off to the side, the nurses bustled around Anna, wiping her wet skin dry, measuring and weighing for the record, checking systems for function.

Where the lesion on Anna's back had been, only a small pucker of skin remained. The worst of her ordeal revealed itself on the left side of her hip, where the pediatric neurosurgeon at Vanderbilt had cut the skin, then stretched it over Anna's spina bifida lesion. One of the cuts had the white rawness of a sore after a long soak in water.

Anna's right foot was club, just as the ultrasound had showed, but she kicked with both legs and wiggled the toes on her left foot.

She wet her diaper - a sign of good bladder function. And best of all, her head showed no signs of the telltale bulging that would indicate fluid buildup.

The nurses handed Anna to Jason, and he held her in the gingerly fashion of new fathers. He carried her to Susan, who kissed her softly on the cheek. Then, in a moment of exuberance, Jason strode with his bundle across the operating room, out the door, down the hall, around the corner, past the nurses' station and to the recovery room, where Anna's grandmother and aunt waited anxiously.

"Here she is," Jason exclaimed, holding her up to their tears.

The nurses met Jason outside the operating room, pushing the newborn cart. Jason returned his daughter to their care, and followed them to the neonatal unit with its lines of sophisticated baby beds, called isolets, that beeped and hummed the vital signs of their tiny charges. The nurses settled Anna between a baby who had been born at 24 weeks and a baby born with a heart defect.

"I look at Anna, and I see her as Anna, and she's our baby," Jason said. "She has brown hair and blue eyes. And spina bifida. It doesn't define her. It's just something she has."

Jason stood at Anna's bassinet and rubbed the back of his daughter's neck as she slept under the warming light. He couldn't have hoped for a better moment.

"For us, we looked at the options and the statistics, but there were not any clear-cut paths. We prayed, and our faith kicked in, and then we could not look back. This was the road we took. This was our road."

Now, whatever hardships they faced along the way seemed distant, and worthwhile. Everything had been worth the chance for Anna.

Lying in her hospital bed, Susan grew restless. Everyone promised that Anna would be brought to her before day's end, so she could, at last, be a mother to her baby.

Finally, at 3 p.m., a nurse tapped on the door and declared Susan fit for an outing. Carefully, Susan rose from the bed - bent over and clutching her diminished womb - and she climbed into a wheelchair. With Jason by her side, Susan rode down the hall to the neonatal unit.

The tiny girl was fast asleep, and she shuddered awake as a nurse swaddled her into a tight envelope of blanket and gently placed her in Susan's outstretched arms.

Susan was breathless. Anna!

"Oh, beautiful," she said. "Hi, sweetheart. It's your mommy."

A chance for Anna, part one: A daunting choice

A chance for Anna, part two: Surgery in the womb

A chance for Anna, part three: The ordeal of recovery

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