DOB: 12 April 2013
Disease treated: Cerebral Palsy
Sophia is a 3.5 year old girl with a diagnosis of Ataxic Cerebral Palsy. She was induced at 39 weeks due to a low fetal heart rate. We do not know what caused the low fetal heart rate and we may never know. She appeared fine at birth but it became evident over the next few months that there was something wrong.
She has microcephaly (small head circumference), trigonecephaly (her frontal lobe is smaller in proportion to the rest of her brain resulting in the metopoc sutures fusing prematurely), hypotonia (low muscle tone), apraxia, dysarthia, and global developmental delays. She has been receiving PT and OT services from about 6 months and Speech from 15 months of age. She understands a great deal but her biggest difficulty is motor planning and execution and having her body do what she wants it to do.
When Sophia was about 18 months old, we looked into stem cell therapy and found a doctor who was going to perform a procedure where she would inject her own umbilical stem cells into her spinal fluid. Turned out the blood was contaminated so we looked for another way to have a safe procedure using her own stem cells.
We found out about another Hospital and were excited to learn that we would be able to safely remove stem cells from her own bone marrow and reinject into her spinal fluid. We felt reassured knowing that it was her own blood and that her body would not reject it-but we were of course worried about whether her little body could handle the procedure and didn’t know what to expect. We booked the procedure when she was 23 months.
Sophia prior to the procedure was able to take independent steps but she did not have the protective reaction when she lost balance. She had to wear a helmet because she would freefall backwards on her head. She also had a very wide gait, her feet were pronated (she had to wear orthotics for this) and her arms were very high. She also had an eye that turned in, that required a patch several times a day. She was not able to chew and her main source of nutrition was milk-the only foods she did eat was cheerios and baby foods that dissolved easily in the mouth. She did not have any words and had very limited sounds (m, b and vowels). She understood a lot and was always a very social and happy child.
The procedure was very simple. Sophia went in for the first part, handled the anesthesia just fine and the procedure itself of extracting the bone marrow took no more than 30 minutes. She woke up within an hour and she was just fine. We went back to the hotel and she did not exhibit any adverse effects or pain. After a few hours, we went back to the hospital and had the second part of the treatment-they put her under and injected the stem cells into her spinal fluid which also took no more than 15 minutes or so. She woke up again within an hour and we went back to hotel. She was totally fine and back to her normal happy self by that evening.
As far as results-it is hard to say exactly what is a direct result of the procedure and what may be purely developmental because she was so young when she had the procedure. One thing for sure was that the amount and pace at which she progressed following the procedure was much more and faster than prior to the procedure. Things we noticed within a few weeks was that she developed a protective reaction when falling (we never needed to put the helmet back on once we got back home), she was able to chew foods and had more of an interest in foods (fries, peas, pretzels) within a week of the procedure. She seemed to just be more aware of everything and she played with toys more purposefully.
Currently, Sophia is running (at a slower pace and not as smooth as other children), walking up stairs by holding a handrail, jumping (she can get about 3-4″ off the ground, climbing on furniture, her movements much more fluid, eating pretty much everything we give her (meats, cashews, breads, chicken nuggets, pizza), drinking from an open cup with and without a straw, has about 100 words (not clear but we can understand), 10-15 words that a stranger can understand. Her head circumference has also grown in percentage-she used to be well below the 0% but her head circumference is now between the 5-10%. Her eye no longer turns in which no longer requires to be patched and she no longer requires orthotics. She does wear inserts in her shoe but now she is able to wear a regular shoe. When our friends/family see Sophia they are amazed at how much she has progressed. They truly believe that the stem cells helped. She still has a long ways to go but she is doing so much more than any of us had ever anticipated at this point. In addition,we are all impressed with how Sophia acquires new skills so quickly and keeps advancing in her motor skills. She is currently enrolled in a Pre-school Aphasia (language-based) program 18 hours/week, and also attends PT, OT, and speech therapy.
Overall Impression and Second Treatment
Our experience was a great one and I do truly believe that the procedure has helped her make significant progress. I know that it is an expensive procedure and travelling abroad is not easy-so I do not want to encourage or discourage anyone one way or another. I think you just need to go with your gut instinct. We went into it not expecting any miracles but little bit of progress as long as we felt that the risks did not outweigh the potential benefits. We were very pleased with the results and decided to make a second trip. She did have a bit of nausea and vomiting after the stem cell injection and she seemed to be in some pain at the injection site but all of that was resolved within 48 hours. It is too early to say what progress she has but already we have noticed that her drooling has almost stopped completely and that she has acquired many new sounds and words following our second trip. In addition her words sound much clearer. She is much more motivated to use her words and will repeat many words that she hears-I think she even surprises herself when she realizes she can produce a sound she wasn’t able to just a few weeks ago. She is even beginning to combine 2 words such as “Hi dad” or “Mom eat” that she wasn’t able to do before the procedure. We have also noticed that her fine motor skills have become much more controlled particularly when drawing-she is trying hard to draw with more precision.
We hope that this information is helpful for anyone considering the procedure for themselves or a loved one. We can only share our personal experience but one common goal we share is that we all want the best for our loved ones and will go to whatever lengths to help improve their quality of life. We wish everyone all the best!