I’m writing this blog a day after my application to attend a medical CP conference was denied. In that auditorium, I wanted to present the story of a young boy and his mother who would not accept the diagnoses of his doctors. Even though I won’t be able to show the medical community this story, I hope it will be seen by other parents to show how they can make an immense impact on their child’s motor progress by using simple somatic techniques to bring awareness to their bodies.
Mark is an energetic, vivacious 4 year old boy with CP from the UK. Four months ago, his mother June took him for a routine x-ray. To her surprise, the doctors told her that Mark’s hips were subluxated—the right hip was out of socket 20% and the left hip was out over 50%. Subluxation is a common condition amongst children with CP because, due to the lack of stimulation from gravity and bodyweight, their bones often don’t form properly. The most common subluxation site is at the hip sockets. Without weight-bearing in infancy, the acetabulum is often shallow and the femoral head barely forms an angle with the rest of the femur. Despite the commonality of these symptoms, the news was devastating for June. Mark had never shown any signs of pain in his hips and his physical therapy had been going super well:
We recently found out about Spiral Movement Center for children and that’s when we met Yuji. Mark suffers from very stiff muscles that are extremely tight. We were surprised that within [a] half hour of Yuji stretching Mark’s legs and ankles he was able to release Mark’s muscle and relax him so much that he actually fell to sleep! This was something so simple that Mark had not experienced before. As you can imagine [the doctor’s subluxation diagnosis] came as a big shock to me as I thought Mark was doing really well and getting stronger. I wondered if there was anything more I could do with Mark to try help his situation other than what I was already doing. I was hoping he wouldn’t need to have surgery….I’m was praying he wouldn’t but I felt I had to wait and see what the doctors would say at the hospital.
June was referred to Alderhay Hospital, one of the top medical facilities in the UK. The doctors there recommended immediate surgery for Mark. They wished to do an osteotomy, a procedure where the thigh bone is cut and redirected back into the hip socket. It would be a highly invasive surgery that would require drastic measures: (1) severing and rotating the femurs; (2) pins to hold the thigh in place (3) 8 weeks of wearing a leg cast and (4) many months of painful rehabilitation. When June asked the doctors if there could be another way of correcting Mark’s hips, the doctor’s response was disheartening. June sent me this message by text:
I have been in touch with the Alderhay team and this is what they have told me. Mark’s hip is so significantly out of place that it is virtually on its way out. At this moment in time no amount of physio is going to fetch that back. They feel that surgery sooner rather than later is the best option for Mark. If it comes out any further he will be in a lot of pain which they want to try and avoid if possible. I am absolutely terrified of Mark having surgery and if there’s any possible way of a more natural approach to fix this problem I would like [to] take it.
Although Mark’s x-rays were concerning—I had never worked with a child whose legs had subluxated so far— I wasn’t convinced that surgery was the only option. Over the years, I’ve often found that a child’s symptoms are not always directly connected to their condition. For example, it’s often said that autistic children don’t like to be touched—that they’re tactilely defensive—but in my experience I found that that was simply not true for the majority of autistic children. You just had to know how to touch them with sensitivity and openness to gain their trust. In Mark’s situation, I couldn’t believe that his hips were just prone to dislocate due to his CP. There were lots of unanswered questions. Was Mark stressed when they took the x-ray? What position was he in? Why was he not experiencing any pain yet? In my experience, I knew that in certain situations Mark’s legs could be very hard and spastic, in other situations they could be absolutely soft and loose. Could his problems stem simply from being physically stressed at the hospital? Was the x-ray truly the best representation of Mark’s condition? I was also surprised that the doctors did not suggest any therapeutic interventions to avoid surgery—June and her husband Mark were simply told to wait for surgery to happen in 90 days. It made no sense, especially as June and I had managed to find ways to relax his muscles in our previous sessions together.
Despite the dire predictions of the doctors, we resolved to try and help Mark by focusing on a somatic stretching program. We weren’t really sure whether we could solve Mark’s hip issues but we thought we could try. The doctors said that the hips were impossible to bring back into place because of the intense force necessary to counteract the shortening of Mark’s ligaments. But a somatic approach works differently. Instead of trying to fix a problem immediately in one go, we embarked on a process of gradual intervention where Mark could slowly learn how to use his body differently. I devised a few gentle bodywork manipulations for Mark’s hips that I thought might help. As Covid prevented my traveling to the UK, June herself would do all the therapy—15 minutes in the morning and another 15 minutes in the evening. We also focused on supporting his hips during the day using various manual techniques as well as making sure that Mark slept in the proper position at night. Finally, we drew up a program of physical care for Mark and enlisted all of his caregivers, teachers and physical therapists to help out with this project. The combined efforts of people working together are always more effective than working alone, and thankfully everyone came on board to help Mark try to resolve his hip issues.
After 90 days, the big day came where June and Mark returned back to Alderhay for a final exam before surgery. We had asked to make sure that there was a final x-ray done on Mark’s hips. Before it was taken, June spent a few final moments making sure that Mark’s hips were relaxed by doing some last bits of stretches. Even though we had been working hard, there was still an air of desperate inevitability in the air. June’s husband told her gently, “There’s no reason to continue with that nonsense. We have to accept that Mark is where he’s at. We have to accept what will happen in the next few months.” June maintained her physical treatments nonetheless, even up to the point that Mark was placed on the x-ray table.
After the x-rays were processed, June was called up to the doctor’s office and she sent me this text:
Hi Yuji! You’ll be pleased to know Mark had an x Ray at Alderhay today ( hips gone back into socket absolutely perfect no need for surgery and he said it’s a miracle I’ll show you the x Ray when I get home couldn’t be happier the stretches have worked.
When she sent me the x-ray, I was taken aback. The results were surprising, even to me, as it was the first time we had worked on a child’s hip in this way. Mark’s hips had returned back to their normal position! When I spoke to June, she filled in the details. Apparently the doctor had to take a second x-ray just to confirm the results—he told her that during his career he had never seen a child’s subluxation change so much in so short a time—normally the change is very small if there is any change at all— and that we should simply continue what we were doing with Mark.
It was a very emotional moment for June and I, as both of us were working against time and the advice of the medical profession to change the trajectory of Mark’s life. Surgery would have meant a life-altering change in the quality of Mark’s life. While it’s true that many medical procedures are beneficial to a child’s life, it’s also true that some may be unnecessary, and in Mark’s case, it meant a future life where he would not be able to use his body in its natural state. It also made us realize that there may be other young children in the world who could learn to overcome their physical issues through less invasive somatic interventions. In my opinion, traditional interventions for children with disabilities do not start early enough in their lives. With care and proper understanding, many children can overcome the symptoms—subluxation, spasticity, motor frustration—that are associated with their condition. The emphasis has to be on proactive and holistic care. I have two other children currently in my care who are challenged with subluxation in their hips and in need of surgery. I am hoping to use these same techniques with them and see whether they are effective—then hopefully, if it proves successful, I can share these somatic techniques with other families in the disability community, as the need for creative interventions in early childhood is not nearly explored enough.