Many of you have inquired about the progress of 16-month-old conjoined twins Ahmed and Mohamed Ibrahim of Egypt since they underwent intensive therapy at The Upledger Institute HealthPlex Clinical Services September 16-20, 2002. It's been an incredible odyssey to say the least -- and it isn't over yet.
During their week at UI HealthPlex, Ahmed and Mohamed showed phenomenal improvements. Dr. Mamdouh Abou el-Hassan, the twins' physician from Cairo, said, "I'm a physician of medical practice. We are not usually convinced of this kind of therapy, but when you see improvement with your own eyes, you can't deny it."
We have to start by saying these boys are remarkable! It takes about a second in their presence to be totally captivated by their personalities. Their surgical team has dubbed Ahmed, the larger and quieter of the two, "the philosopher" and Mohamed, the smaller and more outgoing one, "rascal." For all intents and purposes they're happy and well-adjusted. They laugh, play, interact with those around them, and are perfectly at ease in the spotlight.
Yet the surgery needed to separate them where they are conjoined at the crown of the head has been called "one of the most challenging decisions I've ever had to make" by Dr. Kenneth Salyer, the lead surgeon and founder of the Dallas-based World Craniofacial Foundation, which sponsored the twins' trip to the United States. Unlike the recent case of the Guatemalan girls who were successfully separated, Ahmed and Mohamed share brain matter and extensive blood vessels, some of which snake like a maze between the two.
It was because of the very complexity of the case that Dr. Upledger was called to Dallas in August to evaluate the boys. Dr. Salyer had learned about the effects of CranioSacral Therapy from his wife, Luci Lara-Salyer, LMT, who studied CST through the Institute. They both believed it might help to prepare the twins for surgery.
Initial Evaluation in Dallas, August 2002
"I had never worked on or even seen conjoined twins before," Dr. Upledger said. "I had no idea what I was going to feel until I put my hands on them."
The twins' condition prior to their first CST session in Dallas was not encouraging. The boys were subdued and the smaller Mohamed was not eating or having bowel movements. "It was like Ahmed was eating for both of them," Dr. Upledger said. "So the first step needed was to look at all the physiological systems and decide from the feel of things whether the systems were being controlled by the larger twin or not. We could tell because there were two signature energy patterns. So if we found both those signature energy patterns in one heart, we knew that wasn't going to be a good thing."
Fortunately, evaluation showed that not to be the case. The degree at which the heads are conjoined caused flat spots to form on the back of each twin's head. That area on Mohamed was situated over the vagus nerve nucleus on his right side. "That controls the stomach, gallbladder and liver," Dr. Upledger said. This, he believed, might explain why Mohamed had not been eating.
Over the course of the next three days, Dr. Upledger, along with Sally Fryer, a Dallas-based physical therapist certified in CranioSacral Therapy, and therapists from her Integrative Pediatric Therapy practice, worked with the twins up to an hour and a half each day. With therapists positioned at the twins' sacrums, Dr. Upledger worked on the juncture of the boys' skulls to stimulate fluid flow and encourage decompression. "I think they were motor-sluggish because of the compression on each of their heads," Dr. Upledger said. "So as I got a little bit of space in there, they started kind of twisting their heads away from each other and responding in their sensory systems a lot more, too."
The boys showed marked improvement. Prior to therapy "Ahmed was weaker and more passive. And Mohamed was trying to get up on his hands and knees and initiate rolling, but he couldn't," Fryer said. "By the end of their first CST session the twins were smiling and playing with each other, imitating sounds and overall much more animated." And about three days after Dr. Upledger returned to Florida, Sally called to tell him that Mohamed had started eating solid food and having small bowel movements.
The Twins Travel to The Upledger Institute HealthPlex Clinic for Intensive Therapy
The next step was to bring the twins to UI HealthPlex in Florida to find out what further improvements could be made if the boys were exposed to a week of intensive therapy with a team of skilled CranioSacral Therapists. The goals were to bring about as much independent functioning of their body systems as possible and, most ambitiously, to encourage the boys' bodies to begin a subtle separation where the vessels are shared.
Therapy over the course of the week involved at least three therapists working on the twins at any given time for a total of approximately five hours per day. In addition to Dr. Upledger, the team included 13 certified CranioSacral Therapists on staff at UI HealthPlex and 12 visiting therapists.
Along with the skull work, the team concentrated on getting each of the boy's systems functioning independently. Dr. Upledger explained, "On the second or third day I decided we'd do this system by system. We worked first on their livers to make them independent from each other, then on their spleens, their hearts, then their lungs. Then we went to their brains and spinal cords and craniosacral systems. I think they did very well."
Sally Fryer agreed, explaining that before CranioSacral Therapy, "These little guys weren't babbling. They weren't eating. They couldn't play with their feet. They couldn't pull themselves into a crawling position. Since we started the CranioSacral Therapy there has been dramatic change." After just one day of the intensive therapy, for instance, Ahmed closed his eyes completely while sleeping - something he had never done before.
The Twins Return to Dallas
Since returning to Dallas, Ahmed and Mohamed have continued to show progress through their sessions with Sally Fryer and her staff, who have been working with the twins three times a week for up to an hour and a half each time.
Ahmed and Mohamed are now standing with the aid of a therapy ball. "They can bear weight on their feet," Fryer reports. "They stand over the ball and push it with their hands, and they rock back and forth. Both have become really vigorous in activity and social interaction."
The decision whether or not to perform the separation surgery has not yet been made. Surgeons are still weighing the feasibility of surgery while they await the arrival of the twins' father, who has the unwanted task of giving the ultimate yes or no to the procedure. Should surgery be given the green light, Dr. Upledger plans at least one visit to Dallas to help prepare the twins for the procedure, and he has been invited to observe the separation surgery itself. Even if surgery is ruled out, however, he believes it is important to continue the therapy.
You can see photos of the twins at http://www.upledger.com and updates will be posted as they become available.
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