Boy Oh Boy!
Nurses develop a familial bond with formerly conjoined Egyptian twins

By Glen Fest
March 23, 2004

Robin McCune saw two little boys in her dreams, lying side by side in a bed. So did Tracey Greenwood. Janet Doggett said two of her co-workers told her of visions of the same toddlers sitting up, playing together in the sand.

“I know we’re not supposed to become attached to our patients,” said Doggett, RN, “but these little guys wrap their fists around your heart and they don’t let go.”

Last summer, all three nurses at Medical City at Dallas Hospital were under the spell of a special pair of patients. Two-year-old conjoined twins Ahmed and Mohamed Ibrahim smiled, played and laughed their way into the nurses’ spirits during the 17 months they spent at two Dallas hospitals.

Ahmed and Mohamed realized nothing unique about being craniopagus twins joined at the crown of their skulls. They also knew nothing of life outside hospitals or one void of the extended family of nurses who happily played exciting games of patty-cake and “So Big.”

Nurses were as ingrained as family. Their connection with the boys is what made October so anxious and frightening for the 20 or more nurses at Medical City and the on-campus affiliated North Texas Hospital for Children (NTHC) that took part in some aspect of the twins’ care. As the date for their high-risk separation surgery neared, the shared image of Mohamed and Ahmed—standing apart and looking into each other’s eyes for the first time—was rampant.

“The chances of them surviving this were so slim, and we were so worried and concerned,” said McCune, RN, the pediatric nursing supervisor at NTHC. “And I told Tracey [Greenwood], ‘Don’t think I’m weird, but I had a dream that I walked into the boys’ room and they were separate and they were in the same bed.’ And she said, ‘I had the same dream.’ It was the weirdest thing.”

Two of a kind

It doesn’t take an imagination to see the boys sitting apart these days. But until a few months after their historic separation surgery, it required a security clearance.

With intense media interest in the twins still at a fevered pitch, visitor access to the boys’ ward was restricted to family and a select group of approved hospital personnel.

Among the few to regularly see the twins were Greenwood, RN, and Stacey Ruby, RN, staff nurses at NTHC who came to treasure their unimpeded quality time with their “little guys.” Greenwood is the boys’ favorite playmate for So Big, a game in which she asks, “How big is Mohamed?” or “How big is Ahmed?” It wasn’t long before the sight of Greenwood entering their room prompted Mohamed and Ahmed to instinctively raise their arms.

They don’t do it when Ruby walks into the room, which proves to the nurses just how observant the boys are. Ruby happens to be Greenwood’s own identical twin. While most consider them dead ringers, the boys know Ruby is the “Patty-cake” and “Old MacDonald” sing-along nurse.

“They are normal little boys, and we’ve seen how their personalities have grown after the surgery,” Ruby said. “Separate little personalities that you just didn’t get to see when they were conjoined. That’s really cool.”

In Mohamed, the nurses already spy a fun-loving, mischievous streak. He loves to reach for pagers and cell phones, and tries to get away with usual 2-year-old antics. After being scolded to “be nice” after striking Ahmed, Mohamed quickly learned to start rubbing his cheek and saying “nice” to show he’s learned his lesson.

He’s also a charmer. McCune said Mohamed once grabbed her hand in the hallway, pulled it to his lips and kissed it like a perfect gentleman. “He just smiled,” McCune said, with a laugh.

Ahmed, the nurses said, is more reserved and less bold. He is also, thus far, slightly behind his brother in their rehabilitation efforts. Mohamed is gaining strength and learning to walk, while therapists are still working with Ahmed to strengthen his neck muscles to hold his head straight. Both have years of rehabilitative work ahead, to strengthen muscles that they didn’t use while together. They also face more surgeries, including reconstructive surgery in the spring.

Mohamed has adopted a protective affection for Ahmed, keeping a guarded watch over his brother. They suspect some of it may be in self-interest, the nurses admit.

“If you’re doing something to help Ahmed, like putting down an empty tube or doing something that hurts and upsets him, Mohamed won’t cry ... because he doesn’t want you to do that to him,” Ruby said, with a laugh.

Facing fears and risks

Ahmed and Mohamed are, together, one in 10 million. Of every 100,000 live births, only one will be a set of conjoined twins (and about one in 200 identical twin births). Of those, less than 2 percent arrive as craniopagus twins, with fused skulls and shared cranial blood vessels that make separation a remote possibility.

A pair of Guatemalan craniopagus twins, Maria Teresa and Maria de Jesus Alvarez, were successfully separated in August 2002 at UCLA Medical Center, and were home by February 2003.

There have been cases of such twins living into adulthood, such as Lori and Reba Schappell of Reading, Pa. Another famous set of twins joined at the skull, Laleh and Ladan Bijani of Iran, made headlines worldwide in July 2003 when they opted to be the first-ever adult craniopagus twins to undergo separation. But after a 53-hour operation, the 29-year-old twins died of blood-loss complications.

The deaths of the Bijani twins shook the nurses at Medical City last summer, reminding them of the peril the Ibrahim twins faced. “When you have the Iranian twins in the back of your mind, you’re thinking the worst,” admitted Angie Buckmeier, RN, nurse coordinator for child patients at the Dallas Craniofacial Center within Medical City.

The high-risk surgery was in the planning stages from the day the boys were born in a town 500 miles south of Cairo. Pediatric experts invited pioneering craniofacial surgeon Kenneth Salyer, MD, chairman of Medical City Dallas Hospital’s International Craniofacial Institute, to examine the twins for possible separation. The earlier the twins were separated, the better their chances for a normal life.

At 6 months of age, Mohamed and Ahmed were flown to the United States for extensive MRIs and CAT scans in Dallas. The results showed the boys had independent brain function, but the intertwined cranial vascular structures, including the crucial saggital sinus vein, would be the neurosurgeons’ greatest challenge. Specialists examined the test results as well as a detailed model configuration of their cranial structures, determining it would be much more difficult than the Alvarez twins’ separation. Some doubted whether the boys could be separated.

Even with the long odds and the potentially devastating outcome, nearly every nurse in the pediatric ward volunteered to work with the twins, Buckmeier said. She narrowed the volunteer list and selected a team of 20 to 30 nurses who would tend to the boys in the year and a half they would spend in tests and surgical preparations.

Mohamed and Ahmed spent most of their preoperative days with two Egyptian nurses, Wafaa Dardir and Naglaa Mahmoud, who came over with the entourage of physicians and caregivers from the University of Cairo hospital. The boys had to wear special jackets to prevent bedsores because they were confined to lying on their backs most of their waking hours.

Greenwood and Ruby became two of the Medical City nurses closest to the boys, which may be attributable to their own twinhood. Both felt an early affinity for the Ibrahim twins and think the feeling is mutual.

“Of course,” Greenwood said, with a laugh.

Greenwood brought mirrors into the room, so the boys could look at each other. Ruby chuckles at how Mohamed kept trying to take her pager and cell phone off her uniform with his feet.

The nurses helped the boys through the pain, discomfort and monotony of hospitalization, as well as through a precursory operation in April 2003 to implant five tissue expanders (silicone air balloons) into their skull and thighs to develop excess skin for later grafting.

As the separation surgery neared, the fate of the twins began to consume more of the nurses’ personal lives. Buckmeier recalls how her 8-year-old son took a heightened interest in the twins after they arrived in Dallas.

“He was very curious and concerned for them,” Buckmeier said. “He asked for the year and half that they were waiting, ‘Have they had surgery yet?’ ”

In the weeks leading up to the operation, the hospital arranged for group prayer services for the separation team. “We had the peace of knowing we had that support and by having that prayer meeting as a group, we were all focused on the same desire and outcome,” Buckmeier said.

A stunning day

In early October, the boys were transferred to the Children’s Medical Center Dallas, where neurosurgeons opted to have the surgery. Although just 10 miles down U.S. Highway 75 from Medical City, the nurses who would stay behind steeled themselves for the chance the Egyptian twins might not return.

Doggett, meanwhile, assembled her best team of OR nurses from NTHC with those from Medical City and Children’s Medical Center. They expected it would be the most difficult and harrowing job of their careers, and if that weren’t enough pressure, Doggett had to replace two nurses who left the hospital since the tissue expansion surgery.

“Management gave me free rein to do what I needed to do,” Doggett said.

Working with two shift teams, Doggett and her nurses began OR preparations for a procedure that would involve 40 doctors, nurses, anesthesiologists and scrub technicians. The boys were held in place in special “clamshell” capsules on a custom-made operating table that would hold the twins rigidly in place, and carefully calibrate their position, allowing doctors to turn them 360 degrees for proper surgical angling. “When they were measured for this original table, they were smaller. So the feet were almost at the very edge. They had really grown,” Doggett remembered.

“We got down to the dry run the week before, and realized we had to make adjustments in how we were going to approach it. But everything went smoothly,” Doggett said. Doggett arrived that Saturday morning at 6 a.m., tired from a restless night and sharing her fears with other nurses, including one of the Egyptian nurses. “I ran into Wafaa. We both cried together, and she said, ‘I want these boys back.’ I said I’d do my best.”

The surgery team, including Salyer and a neurosurgery team from Children’s, was initially delayed to work on the precise positioning of the boys’ operating table and to order up more X-rays of Ahmed’s lungs. The careful removal of the tissue expanders and portions of the skull preceded the complicated blood vessel work that continued overnight.

Doggett remembers taking a three- or four-hour nap break before returning to the OR at 6 a.m. Sunday. At 11:17 a.m., Mohamed and Ahmed were separated. It was a moment that Doggett can only describe through her tears as “stunning.”

“It was like slow motion,” said Doggett, who had never been involved in a conjoined twin separation. “It was stunning. It made your whole world just stop right there.

“I can’t tell you when they were, quote, safe,” Doggett said. “There was never a moment where we felt we were out of the woods, because they were such a critical case. I think I’ve been more emotional about this whole thing than I have ever been in my entire life.”

At the moment of separation, the world was still in the dark about the Ibrahim twins. Medical City and Children’s Medical Center were sending runners out to awaiting media to provide updates, but no announcement had yet been made when Buckmeier received a cell phone call and a pager alert at church.

“I had just forgotten to turn them off,” Buckmeier said. After reading her text message, Buckmeier e-paged her nurses: “We have two boys separate.”

Buckmeier’s message reached McCune and Ruby in Philadelphia, where they were getting ready to board a plane back home from a nursing conference. They both screamed, danced and cried in front of some obviously puzzled airline patrons.

“We couldn’t tell too many people, because it hadn’t been released to the media yet,” McCune said.

It was their little secret, and one they were relieved to have. Otherwise, they would have to wait until their three-hour flight landed in Dallas before they would hear any news. “CNN didn’t have the scoop and you guys did,” Buckmeier joked to a nodding McCune.

Back in Dallas, Mohamed and Ahmed were under an induced coma that would keep them unconscious until the next Wednesday. A month after the surgery, they were transferred back to NTHC at Medical City. The day they returned, the nurses said it was like old times.

“Seeing them return, you wondered if they remembered us,” Buckmeier said, “but right away, they did.”

Little giant steps

More than four months after surgery, some of the twins’ time with the nurses is being lost to others. Ahmed and Mohamed spend four hours a day with physical therapists.

Their days are sometimes partially devoted to outside visitors eager to see their progress, like Texas first lady Anita Perry (a registered nurse) and the Dallas Cowboys cheerleaders. The twins were filmed recently for “The Oprah Winfrey Show” and local television news programs, playing in their therapy gym filled with tons of plastic and rubber toys. The Feb. 23 broadcast of “Good Morning America” featured the boys, their parents and Salyer.

Both get out of their room to roam the hallways more frequently with their parents or their sponsors with the World Craniofacial Foundation (which is paying for the family’s medical expenses).

The road ahead for the boys is still a long one, including the major reconstruction surgery scheduled in April. So the boys still get excited to see Greenwood and Ruby, to show off their fast-developing motor skills and all those new words—in both English and Arabic.

While the Ibrahim twins are learning, the nurses say they also gain something new each day. They are getting closer to the Ibrahim family, as when the twins’ mother was eager to share her Egyptian recipes with Ruby. The pre-separation trepidation from when Mohamed and Ahmed were wheeled into surgery—and into history—are fading.

“When they came back from surgery, Stacey was taking care of Ahmed 85 and Mohamed was crying by himself,” McCune said. “For the first time in a year and a half, I was able to pick him up and rock him, because before it always took two of us to carry the twins anywhere.

“He just laid his head on my shoulder, and I cried. It was the sweetest moment I had had in a long time.”

Contact Glen Fest at glenf@nurseweek.com.