DIAGNOSIS: Hypoxic Ischemic Encephalopathy followed by Cerebral Palsy, acquired Microcephaly, developmental delays and right sided Erb’s Palsy
REASON FOR COMING TO TREATMENT: When Will was born, he appeared to be a normal baby, but his parents soon noticed that he was not moving, crying and appeared to have difficulty breathing. Shortly after this, he began to have severe seizures and had to be put under a heavy regime of anticonvulsant medication. EEG tests taken at this time revealed that Will had almost no brain activity. At three days old he was diagnosed with Hypoxic Ischemic Encephalopathy caused by a lack of blood flow and lowered oxygen levels in the brain. The doctors told his parents that he would likely develop Cerebral Palsy and would have severe physical and mental disabilities when he grew up. Shocked and distressed by this news about his diagnosis so shortly after his birth, his parents were unsure of what to do and their doctors only told them to expect the worst. However, they were determined not to give up on Will and to do everything in their power to give him the best possible life. After thoroughly researching their treatment options, they discovered umbilical cord stem cell transplants being used in China and decided that they were the best option for Will.
TREATMENT: Umbilical Cord Stem Cell Transplants, Cord Serum and Nerve Growth Factor combined with Rehabilitation Therapy. START OF TREATMENT: 4 January, 2008
BEFORE THE TREATMENT: Will’s symptoms before he came to China stemmed from his diagnosis of Cerebral Palsy and Erb’s Palsy. He has a mixed type of Cerebral Palsy, which means that the tone in his muscles fluctuates from very high to very low. Doctors at the hospital in China also diagnosed him with ataxia because he had difficulty balancing and with coordinating his movement. Will could control some of his movements and was just starting to roll over before he came. However, these movements were quite slow and clumsy. His trunk muscles were too weak to hold himself upright and he would flop over and become distressed when sitting if no one was there to help him. While at home his parents had him doing physical therapy and he was working on standing. He could stand in a standing frame, but he had to lock his knees while doing this, so it was not a natural standing posture. Making it even more difficult for him to stand, the bottoms of his feet were very sensitive and he would pull them back at even a slight touch. His Erb’s Palsy affected his right arm, making him unable to control it. Consequently he had great difficulty rolling over because his arm would get caught underneath his body. Drooling and eating were also a problem because he could not control his jaw or tongue very well. He had started to make sounds, but they were limited in range for the same reasons. Will loved to interact and play with everybody and had a big infectious smile.
AFTER THE TREATMENT: After the stem cell treatments, Will’s mom, Nicole, and Grandmother, Irene, who accompanied him to China for his treatment, witnessed many advances in Will’s skills at a pace they had never seen before. Overall, his coordination and balance were greatly improved. He was able to reach out and grab things more accurately and more quickly than before. For instance, Irene had to watch out for her glasses because Will liked to pull them off her face and he became too fast for her to avoid his hand. His trunk muscles became stronger and he was able to hold himself sitting up for significant periods of time. If he started to fall over, he could use his hands and arms to brace himself and re-balance. Nicole said that this will give him more opportunities to interact with other people, allowing him to look them in the face instead of lying on his back all the time. After the treatment, Will was able to role over much more quickly than before. For instance, if you put him on his stomach he would immediately role to his back. His ability to stand also improved; he could stand without locking his knees and with minimal help from his mom. Also helping him to stand better, the bottom of his feet lost their extreme sensitivity to touch. His control of his mouth and his tongue improved greatly, resulting in a drastic reduction in his drooling and the ability to make new sounds. While in the hospital, Will started to mimic his mom while playing peek-a-boo, often by blowing raspberries at her. She believes this is the start of him learning to communicate. His wonderful smile stayed the same and with his new abilities, he will be able to play and interact with more people in new and more complex ways.
Will's mother talks about how he was before the trip
Will's improvements in balance and coordination
Will's improvements in rolling and weight bearing
Will's mother talks about how his communication has improved
Will and his mother show us his improvements
Will's grandmother talks about her experience in China
