Dr. Salyer: Separation Anxiety
Separation Anxiety: Mohamed and Ahmed
And ever has it been known that love knows not its own depth
until the hour of separation.
Kahlil Gibran
Though I have operated on thousands of children, I remember every one is precise detail. I see each child’s face with pristine clarity in my mind’s eye, as if I operated only yesterday. Every one of these little souls is a poignant testament to the authentic, human spirit — to the resolve and resilience of remarkable human beings who face and overcome the anguish of anomaly — simply striving to be normal. I embrace them all as my family, since we typically grow together throughout over an often-extended treatment process — requiring multiple procedures and many surgeries as they grow and mature into adulthood.
However, absolutely nothing could have prepared me for the experience in October 2003 of separating Mohamed and Ahmed Ibrahim-Gad, the Egyptian twins, conjoined at the crown of the head. Their story captured the attention of international media, as well as my own heart — and imagination. The risks were undeniable, and with extensive consideration, inspection and circumspection, the team of expert physicians we assembled required over a year to validate the decision to separate. The precise configuration of the boys’ skulls, their vascular web that connected their life-blood, their brain positions, and a myriad of other concerns made the separation process highly dangerous and riddled with uncertainties. Still, the parents and attending physicians felt the rewards far outweighed the potential risks. A life conjoined at the top of the head would hold little quality, satisfaction or joy for these two feisty little ones — especially given the limited resources of the boys’ parents in their small, Egyptian village.
I first discovered the plight of Ahmed and Mohamed when I received an e-mail from Dr. Mamdouh Aboul-Hassan, a pediatric surgeon who had spent six months here in Dallas learning techniques to bring home to Egypt. The twins were born in the remote village of Qos, Egypt (about 500 miles south of Cairo). They were craniopagus twins, an extremely rare condition that occurs in less than 2 percent of conjoined twins’ births. Immediately, they were transferred to the University of Cairo Abu el-Reesh Hospital and placed under the care of Dr. Nassar Abdel Al, head of neonatal surgery. Dr. Nassar was given medical guardianship of the babies and they spent the first year of their lives as patients in the hospital under 24/7 medical care.
Dr. Hassan wrote in detail of the twins’ condition and his dilemma about how best to proceed. Neurosurgeon Dr. Derek Bruce, neuro-radiologist Dr. Crys Sory and I reviewed the CT scans and photos of the boys that Dr. Hassan forwarded to us immediately. Because the quality of the images sent from Egypt made them too difficult to interpret, we decided to bring the twins to Medical City Dallas Hospital for an accurate evaluation. And Medical City, which had donated the hospital costs for the care of a number of pediatric craniofacial patients in the past, agreed to accept the children as charity patients, and the World Craniofacial Foundation, provided the family’s airfare from Egypt to Dallas.
I was astonished when I saw them, almost a freakish unreality. I felt empathy for the boys, imprisoned by their deformity, and for their parents, who had traveled on their last surge of hope to find an answer and a solution for their dear boys in Texas. There was something so profound about their condition, so incongruent with the shining glint sparkling in their eyes that my heart opened up to them instantly. For a moment, I was lost. Gone was the systematic, scientific protocol of a seasoned physician for accessing and determining the recommended methods solutions. Instead, overcome with the emotion of the moment, I just gazed at them in utter amazement.
As we began our journey toward separation, we could never have anticipated what would encounter. In many ways, we are inventing the nuances of this specialty as we go along — a sort of medical improvisation. In addition to the skull attachment, the boys’ venous systems were a knotted tangle of intertwined vessels — which meant we were not certain if there would be adequate venous drainage for both brains after the conjoined tissue was separated. Flow studies indicated that their brains drained out of opposite jugular veins, heightening the possibility of hemorrhage, clotting and potential brain damage with any surgical interruption.
For months, we convened in detailed planning sessions and discussions — sometimes even doubting our intentions. One scenario that was dismissed out of hand was perhaps sacrificing the most vulnerable twin, Mohamed, to save the other, Ahmed. We moved to other options. We consider venous grafting, as well as slow ligation. Another possible scenario involved pulsating the ligature over time — thus stretching out the area that would later be the site of the separation and expanding the available surgical surface area. And another method called for making an incision at the point of separation and slowly pulling the heads to separate apart over a period of weeks. This would require literally teasing the tissue apart —stretching the bone and connective tissue to create the necessary slack.
But ultimately, Dr. Dale Swift of the neurological team developed the most effective, workable plan. Using three-dimensional models, he reproduced the entire joint-venous system, from the largest artery to the smallest capillary. He identified every significant vein and sinus – a vein locate din the brain that allows blood drainage – until the hard data was sufficient to formulate a surgical plan. However, even with this painstaking preparation, the risk of brain damage due to interrupted venous drainage could never be completely eliminated.
The process began with expansion surgery in April 2003, which inserted balloon-like expanders in the boys’ heads and legs. Over time, the expanders were filled with saline to gradually stretch the skin. The excess tissue helped us cover their brains and close wounds after the separation.
Then, beginning on October 11, 2003, and continuing into the 12th, our remarkable, interdisciplinary surgical team successfully separated Ahmed and Mohamed — made possible by the World Craniofacial Foundation, the prayers of the world — and the grace of God.
“We have two boys,” was my announcement after the grueling 34-hour of surgery.
Following the surgery and initial stabilization, they endured months of intensive physical, occupational, speech and play therapy several times daily to learn to move and exist in the world in entirely new ways.
The media’s infatuation with their Egyptian princes did not cease with the successful surgery. I appeared with the boys on The Oprah Show in early February 2004 and showed video to the world of the boys’ progress since the 2003 separation. How gratifying to feel the interset, love and support of so many for these boys. I was heartened by Oprah’s sincere interest in their lives, as well, and by the exposure the appearance gave to the ongoing work of the World Craniofacial Foundation. I talked candidly about how much the entire experience had affected all who had been involved with these magical boys. In late February 2004, we appeared on Good Morning America, and we were all moved by the Ibrahims’ feelings about their boys’ surgery and progress.
Reconstructive surgery for Ahmed followed in February 2005. We grafted bone from his right thigh and combined it additional bone he had grown on the top and some bone morphogenic protein to stimulate his body to grow a new skull. The first step was to open the scalp where the neo-dura, new lining of the brain was exposed. The scalp we had reconstructed, the flap of hair-bearing tissue, separated off easily from the neo-dura, and everything looked good. Since the initial surgery a year and half earlier, Ahmed’s own body had actually grown some bone on the top of his head. Following several months of growth, Ahmed had a solid bone skull.
And so many volunteers with the World Craniofacial Foundation and Medical City Dallas stepped up to help the family during their stay — with everything from accommodations to zoo visits. It was so gratifying to see how the Dallas community embraced these rare little boys. We all fell in love their amazing spirits and indomitable charms.
Throughout the process, the boys’ parents maintained their strong faith in a positive outcome. Though she spoke and understood little English, the maternal joy in Sabah Abu el Wafa’s expressive, shrouded eyes demonstrated her heartfelt emotions. She recalls that when the boys saw each other face to face for the first time after the surgery, the shrieked and then wept in amazement. “They did not understand what had happened and began to point behind their heads,” she remembers. “Still, they could tell something was missing and wanted to touch each other.” Sabah insists that they changed places after the surgery in a way. “When they were together, Mohamed hardly ever moved first. Mohamed was smaller and did not eat, but he now, he’s the one who runs around. Ahmed tries to do what Mohammed does.” She proclaims, “It’s a miracle from God . . . and what a miracle! We felt the prayers of so many people everywhere. I can’t thank you all enough,” she says.
In November of 2005, following a special, bon voyage celebration at the American Airlines Center in Arlington, Texas and three and a half years in Dallas, the boys returned to Egypt — with two passports and a dream come true for the family.
As a special 5th birthday surprise, Dr. Hassan and I visited our two precious boys — now
at home in their native Egypt. Mohamed and Ahmed, thriving and happily reunited with siblings Mahmoud, eight, and Asmaa, ten, were ecstatic to see us, and the feeling was mutual. Celebrating on June 2, 2006, Ibrahim Mohamed Ibrahim, the boys’ father, announced, “I don’t believe I have them home, and they are doing so well.”
Sabah says her life has changed in many ways, as well. Since they must continue their therapy and go to school, she gets out with them much more. Before, she stayed at home with them — closeted away. She explains this sort of activity outside the home without her husband is unusual in her culture, but she must do what is necessary for her children.
Physically stronger than Ahmed, Mohamed is progressing very well. As of his writing, he was walking without assistance and demonstrating a good range of movement; however, his right hand is still weak. Demonstrating a keener awareness of his surroundings than Mohamed, Ahmed still struggles with weakness in his limbs and uses a walker, but his hands are strong. As they grow and mature, they will continue to need physical therapy to maximize their mobility and physical adjustment.
Also evident is the slight, unavoidable brain damage each one sustained as a result of their intricate separation. Only time will reveal the extent and impact of the damage as the boys grow. Still, their spirits are ebullient. When they saw their beloved us, they shouted, “Bravo,” dissolving into peels of laughter. What a memorable moment.
Sabah Abu el-Wafa, their stoic mother, then expecting her fifth child, reported that the twins still think of Dallas as their home. “Let’s go home, “ they chant. “Tell all the people in Dallas we love them.”
