By Sue Anne Pressley Montes
Washington Post Staff Writer
Friday, September 8, 2006
It was the longest day of Ryan Shaw's and Angie Benzschawel's lives, they said later, waiting as doctors at Children's Hospital worked for 19 hours Wednesday to separate their 4-month-old conjoined twin boys. But their weariness fell away when they first laid eyes on their sons as separate beings.
"When we saw Mateo the first time and not seeing his brother next to him, everything sunk in right there," Shaw, 28, of Sheboygan, Wis., said at a hospital news conference yesterday. "It was just amazing to see them in separate beds."
Mateo and McHale Shaw were in critical but stable condition yesterday after undergoing a delicate, marathon operation that their lead surgeon described as a "one-of-a-kind experience." The twins, born May 10 at Washington Hospital Center, were joined at the lower spine, a rare condition that added to the challenge as doctors tried to preserve each child's neurological functions. The surgery also was complicated by their spina bifida, a congenital defect in which the spine fails to close properly, and hydrocephalus, an abnormal accumulation of fluid on the brain.
Doctors, while pleased with the results, cautioned that the infants face myriad challenges.
"I guess it's kind of analogous to climbing Mount Everest," said Robert Keating, the lead pediatric neurosurgeon on the case. "We've climbed Mount Everest to the top. It's a great view; it's very exhilarating and everyone's very excited to be able to come down. But there are many, many roads ahead of us and many medical issues we will deal with."
About 75 medical personnel have been involved in treating the Shaw twins. About two dozen of the doctors, nurses and others were present yesterday, bleary-eyed but smiling. Many began work at 6 a.m. Wednesday, when the infants were taken into the surgical area, and finished only after 1 a.m. yesterday, when both boys were safely transferred to the hospital's neonatal intensive care unit.
Some of the nurses still were wearing their color-coded surgical caps -- green for McHale, orange for Mateo. The parents donned the same color combination, too.
In their short lives, the twins made a big impression. Their parents came to the D.C. facility in April, when Benzschawel was 28 weeks pregnant. Born at 32 weeks, the babies had the usual breathing problems associated with premature infants, McHale more so than Mateo.
Their first procedure came two days after birth, when drains were inserted to reduce excess fluid. In late June came another procedure: to insert inflatable tissue expanders under the skin of their buttocks in preparation for the separation surgery. By stretching, or growing, the skin, much like a woman's belly does during pregnancy, the expanders allowed plastic surgeon Michael J. Boyajian to reconstruct and adequately cover the twins' backsides Wednesday after they were separated.
In preparing for the surgery, Keating said, he could find no reference to a case involving twins with spina bifida conjoined at the spine. About 1 in 50,000 live births is of conjoined twins. Although the Shaw twins shared no vital organs, doctors were concerned about entangled nerves and the difficulty determining which nerve elements belonged to each child.
Shaw, a head butler at a Wisconsin inn, and Benzschawel, 25, a former customer-service representative, had looked forward to, and dreaded, the day of surgery. The couple has postponed their wedding while awaiting the operation.
"We handed off the boys [Wednesday morning], and the thoughts that went through our heads were we'd possibly never see them alive again. That was the biggest fear," Shaw said.
"But we had faith and trust in our doctors," Benzschawel added.
Keating said the surgery went extremely well. "My biggest surprise was that there were no surprises. It was seamless," he said.
The doctors' first task was to insert ventricular drains in each child's head and remove the tissue expanders, which took about 25 minutes. The lengthiest and most painstaking part of the procedure came next, when neurosurgeons exposed the bones of the spine and began neurophysiologic testing on the infants and the separation of the spinal cord. By about 4 p.m. Wednesday, general surgeons were at work isolating and separating the boys' gastrointestinal systems. At 8:58 p.m., the twins were separated. For the first time in their lives, they were placed in separate rooms so doctors could close the large wounds and begin the reconstructive surgery.
Billie Short, chief of the neonatal intensive care unit, said that the twins were on very little ventilation yesterday and, although critical, "are doing very well." It was unclear how their neurological functions might be affected and whether they would ever walk.
"We don't want to be pessimistic, but we want to be realistic," Keating said. "We have to take one day at a time."
The first week is critical, he said, in terms of healing. In the next two or three weeks, he said, "we'll get the tubes out." Perhaps in a month or so, if all goes well, Shaw and Benzschawel can talk about going home to Wisconsin with their boys, though they expect to return for checkups several times a year.
The babies' parents realize that in many ways the challenges are just beginning.
"There's going to be extensive physical therapy, a lot of trips to the doctor," Shaw said. "The road doesn't end now. I guess it just seems a little more clear to us."