Conjoined Twins, Separate Beings

The twins' parents, Angie Benzschawel and Ryan Shaw, describe their relief after the surgery to separate their infant sons, Mateo and McHale Shaw.
The twins' parents, Angie Benzschawel and Ryan Shaw, describe their relief after the surgery to separate their infant sons, Mateo and McHale Shaw. (By Dayna Smith -- The Washington Post)
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.

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