The Baby S Story – Cerebral Palsy
Baby S entered the world healthy, wide-awake, and full of vim and vigor. This happy beginning was quickly turned on its head only a few months later when he had a severe stroke that resulted in his being classified by his doctors as having cerebral palsy. The cause? The neurosurgeons, perinatologists, and pediatricians who were called in to determine the “why” behind Baby S’s misfortune came up with no answers. Their puzzlement was compounded by the challenge of dealing with a baby who once smiled and reached for toys in his crib, but who was now like a limp rag doll, struggling with medical complications and developmental blocks.
For Baby S, any sound—like a refrigerator door closing or someone sneezing—would cause him to cry inconsolably for twenty minutes or more. The developmental blocks meant that the primitive reflexes that would typically be seen only in newborns would be his lot day in and day out. For example, when startled, Baby S’s head would jerk far to the side, and his whole body would stiffen up.
Baby S’s primitive reflex problems were complicated by the fact that his head turned to the side automatically and that one arm would shoot out in what is known among experts as “asymmetrical tonic neck response (ATNR) reflex.” In a word, Baby S was like a prisoner trapped in a brain-injured body; a prisoner who could not even recognize the presence of the many, festive baby toys that friends and family had set up about his crib.
At six months, Baby S still lacked head control. His fingers were curled tightly around his thumbs, his toes were rigid, and his arms had begun to stiffen up and rotate inward. His legs were basically motionless, and when he cried, his back arched into an upside down “U” shape. Baby S’s eyes didn’t focus or move well together, and when he was placed on the floor, he would scream out like someone emerging from a very bad dream. His mobility level was estimated to be that of a two- to three-month-old baby—or less.
At one pediatric neurology appointment, Mrs. S. could hear doc- tors in another room discussing the infant’s latest MRI scan results. They were amazed at the amount of damage and exchanged comments such as: “Wow, look at the holes in this kid’s brain.” Shortly thereafter, Baby S’s neurologist came into the exam room and told Mrs. S. there wasn’t any hope for her baby to ever be much more than “a vegetable” and that he would require special care for the rest of his life (which might be a short one, given the fact that children this severely disabled are at risk for developing life-threatening complications, such as pneumonia).
Mrs. S. and her husband shared a deep, abiding inner conviction that the neurologist’s grave pronouncements were not going to prove prophetic when it came to Baby S, and they promptly sought further medical opinions. A pediatric neurologist on staff at a children’s hospital in Utah disagreed with the first diagnosis, stating that the plasticity of the infant’s brain might help bring about slow improvements. A pediatric neurosurgeon at a medical school in Oregon agreed.
The Ss focused on seeking out research studies, findings, and even ideas that looked promising for stroke rehabilitation. They also enlisted every therapy service available to them through their state services “Birth to Three Program.”
Life became a litany of therapists. The Ss watched as their baby struggled through evaluation after evaluation, typically ending with their being reminded not to expect much for him, save a future of severe seizures and the remote possibility that he might one day be able to interface with the world through technology (computers).
The Ss were determined not to let naysayers have the last word. They fired every therapist who said that Baby S was beyond hope or who treated him like a brainless object that just happened to have arms and legs. Finally the Ss found a “neurodevelopmentalist” with over thirty- five years of experience and special training in brain injury rehabilitation therapy. This doctor’s philosophy—that injured brains could be coaxed into adapting to the injuries and making new connections— made sense. But to do this would take a dedicated team of healers and a lot of determination.
The Ss organized a hand-picked therapy team of doctors and therapists who were highly trained, motivated, and adept at treating brain injury victims. Each team member had to have a specific set of cardinal traits: Hope and open-mindedness. They also had to have experience with helping pediatric stroke patients overcome the odds.
The team of therapists that emerged used their time and expertise artfully to treat Baby S, whom they treated as a person who deserved respect and who they expected would show developmental progress. The immediate therapeutic goal was to maintain Baby’s full range of motion, avoid contractures, and give his brain a chance to heal and recruit as much as it could using integrative treatment approaches.
Baby S’s neuromuscular skeletal surgeon worked to address the neuromuscular skeletal issues associated with a body that doesn’t move on its own, and proved to be a very open-minded advisor concerning all aspects of Baby’s therapy. With her help, the therapy team steered the Ss toward hyperbaric oxygen therapy (HBOT).
HBOT involves placing a person into a chamber where oxygen is pumped in under pressure. Most HBOT center treatments use pressures that are the equivalent to that of about thirty feet below the ocean surface. In the case of babies, mother and child do the treatments together. HBOT proved a godsend for Baby S: After about fifty treatments (called “dives”), his eyes began to work better, he was able to move his toes a little, and his weak appetite dissipated entirely. Unfortunately, money ran out for more HBOT and the S’s fund-raising efforts failed. On the plus side, Baby S never lost any of the progress attained from the course of dives.
After two more intensive years of therapy, including occupational therapy, physical therapy, and speech therapy, the Ss had fulfilled one of their early goals: for Baby S to have a full range of motion without resorting to surgeries, castings, or other prosthetics. This inch-by-inch progress was sufficient to keep the Ss motivated.
Over time, Baby S held his head steadier, and his response to unexpected noises was to cry for only five minutes, rather than twenty-plus minutes, as previously. Clearly, Baby S had overcome the primitive startle reflex and ATNR reflex. And though progress was painstakingly slow, the Ss were seeing the emergence in their son of a happy, sweet personality. He was getting steadily better at recognizing his surrounding environment and was showing an outgoing, playful disposition. Word spread, and in time, many volunteers from the S’s church began coming by each day to help the Ss with Baby’s prescribed home therapy exercises.
As encouraged as everyone who knew Baby S was by his progress, it was evident that it was happening at a snail’s pace. Most alarming was the fact that Baby S’s weight had stopped increasing. Because Baby S could not chew, the Ss were faced with the possibility that a GI tube would have to be inserted in order to give their baby enough nourishment to keep him alive.
The Ss wanted to try HBOT again, as they knew of so many children who were having fabulous results with it. While contemplating where to go for HBOT, they heard about David Steenblock. The Ss contacted Dr. Steenblock right away and were told that he would do HBOT on Baby S at a reasonable cost. After successfully checking out Dr. Steenblock’s background and credentials with Baby S’s surgeon, and consulting the MUMs National Parent-to-Parent Network (www.netnet.net/mums/) and other doctors all across the United States, they learned that Dr. Steenblock was an outstanding physician who was knowledgeable, kind, and on the cutting edge of stroke rehabilitation. Buoyed up by with these glowing recommendations, the Ss made an appointment for Baby S.
While performing an exam on Baby S, Dr. Steenblock shared information and research findings concerning the promise of umbilical-cord blood stem-cell therapy for stroke and other diseases. This rang positive for the Ss, as they had been reading about stem cells and stem-cell research intensely during the year preceding their visit with Dr. Steenblock. As Mrs. S. puts it, “Consulting with doctors at government research centers and other parts of the world via phone and e-mail had become our pastime.”
This body of research raised all kinds of questions in the S’s minds: Would umbilical-cord stem cells cause cancer like some embryonic stem cells had in lab experiments? Would they do any damage? Dr. Steenblock patiently and carefully laid out the long history of effective use of cord blood to treat leukemia and other disease in adults and children. He also pointed out that treatment with this stem-cell-rich blood had not spawned tumors or other dire illnesses in those treated. And, of course, there were no ethical issues as umbilical-cord stem cells are extracted from placental blood. No embryos or aborted fetuses are involved, which was a major issue for the religious S family.
The research presented by Dr. Steenblock, in concert with that amassed by the Ss on their own, suggested that Baby S might benefit from treatment with pure umbilical-cord stem cells. After considerable prayer and thought, the Ss decided this was Baby S’s window of opportunity for improvement. But even if he did not improve, everything they had read and heard indicated Baby S would be no worse for wear for having undergone the treatment. Baby S subsequently received umbilical-cord blood stem cells at Dr. Fernando Ramirez’s clinic in Mexico near the U.S.-Mexican border.
During the first few weeks following the treatment, Baby S was exceptionally tired. Fortunately, his neurodevelopmentalist had been briefed on everything and actually had experience with patients who had received stem-cell therapy. The therapist reassured the Ss that all was on track.
Within a month or so following Baby S’s treatment, the Ss started to see improvements. According to Mrs. S., “Each day was a little like Christmas because we could see a new improvement, however small, we didn’t see before. We saw our baby’s progress begin to speed up. In the year following hUCSC treatment, we saw more progress in Baby’s rehabilitation than in all the previous years of intensive therapy combined.” Among the things the Ss noted: (Note that everything listed below is progress that followed the stem-cell therapy and that this
progress has been cumulative. Once a step emerged, it held fast and was “built on” by successive developments.)
August 2003
• Smoothly flexing and extending fingers in succession on occasion.
• Head stability improved.
• Small improvements each week in terms of muscle strength, as well as his ability to employ muscles to do various things (as noted by therapists).
• Able to rotate his wrists.
October 2003
• An increase in joint articulation and muscle tone (without reliance on Botox injections used previously).
• Shows levels of voluntary muscle control in his legs.
January 2004
• Head shape changes (as noted by therapists).
• Invents some simple one-step games.
• Decrease in spasticity.
February 2004
• Can turn his head toward the sources of noise or voices.
• Is engaging in activities that previously would have elicited intense crying.
• Toes and feet are more animated.
• Has started laughing and kicking to propel himself toward toys.
April 2004
• Although still not able to sit up on own, when supine, Baby S can raise his head and upper shoulders a few inches off the floor.
• Shows more upper lip involvement.
• Is much more capable of connecting specific vocalizations to his needs and their satisfaction.
June 2004
• Raises arms occasionally in attempts to reach and grab.
• Brings himself to a sitting position, using arm support, while his legs are straddling an object.
• Brings his hands to midline twice.
July 2004
• Vocalizes something that resembles singing.
• Enjoys greater head control.
August 2004
• Completes a front-back-front roll for the first time.
Oct. 2004 (After second umbilical-cord stem-cell treatment)
• First eats a banana that wasn’t mashed up. While holding his hand around the banana (with a little assistance), Baby S brings his head to the banana, takes a bite, chews, and swallows it!
• Rolls from back to tummy and attempts to scoot.
• Enjoys surprises, new sounds, and new people.
• Is a very friendly, curious, and happy, little, wiggly person.
Because the Ss endured years of marginally beneficial therapy, finally seeing major improvements only after Baby S’s treatment with stem cells, the S family has come to believe that “the umbilical-cord stem cells are responsible” for the progress. Mrs. S. adds: “We cannot imagine where we would be without the extraordinary efforts of Dr. David Steenblock, Dr. Anthony G. Payne, and their colleagues at Steenblock Research Institute. We can imagine where hUCSC therapy might take our baby. God willing, even though he still has far to go in terms of recovery, the umbilical-cord blood stem cells might ring the alarm clock bell that not only wakes up our baby, but gets him out of bed! All we need is funding for more hUCSC therapy, time, and faith!”


