Patient story of Nicolas Schilling, 5 years, Cerebral palsy due to periventricular leucomalacia
DOB: 9 Nov. 2004
Disease treated: Periventricular Leucomalacia
Nicolas has two sisters, Pauline, age 6 and Mathilda
As told by Nicolas' mother Anne Schilling
Premature birth with consequences
Our son Nicolas was born unexpectedly and prematurely by Caesarean section after 30 weeks of pregnancy. We were on vacation at that time and the medical treatment was not optimal. Just a few weeks after his birth, it was clear that Nicolas had suffered periventricular leucomalacia; large regions of his brain appeared to be damaged.
The full extent became apparent only at the age of about 1 1/2 years. Nicolas is a severely handicapped child; he is tetraspastic with impaired head control, cannot move his hands properly, can sit only when propped up, cannot walk, or crawl, has difficulties speaking, and has impaired vision. After about a year, Nicolas also developed epilepsy and suffered seizures; fortunately, however, he is currently free of seizures thanks to proper medication.
In the following years, we tried everything to improve Nicolas' situation and develop his capabilities. With intensive physical therapy, bio-feedback therapy, Galileo therapy, early childhood vision intervention, osteopathy, and therapeutic riding, Nicolas was able to make minimal progress. Before the birth of our third daughter, we read up on umbilical cord blood, hoping that Nicolas might benefit from it one day.
At a rehabilitation congress, we met Mr. Ludemann from the XCell-Center, who told us a lot about the topic of adult stem cell therapy. We were skeptical and had a lot of qualms and fears. What would the stem cells do to Nicolas, would they mutate and cause bone or something else to grow in his brain? We asked literally everyone about stem cell therapy and did a great deal of research. Specialists and friends were horrified; not enough research had been done to risk therapy. The period before the final decision to try stem cell therapy was very difficult. There is an enormous amount of pressure on parents of handicapped children. But what finally helped us make a decision was that none of the specialists could rule out the possibility of improvement and that according to the independent physicians, no other risks - aside from the risk of surgery - were anticipated and that the chances of successful treatment were especially good for children. Nicolas could not wait 10 years for more research to be done.
Stereotactic brain surgery
In January 2009, Nicolas was underwent stereotactic brain surgery. MRI, PET, and CTG scans were used to determine which areas of the brain were most severely affected and the stem cells were to be injected there. In the operation lasting some five hours, four holes were drilled into Nicolas' skull. After surgery, Nicolas vomited several times and obviously had headaches, which were brought under control by the proper medication. But after two or three days, it was clear that he felt better; he was just a bit fatigued. Overall, he came through surgery and the short hospitalization rather well and with no complications. We felt that he received good care and the intensive consulting and support from Professor Haberland were reassuring.
Results
After just a few days, we had the feeling that Nicolas could see better; he drooled less and was generally more alert.
"he is now training to stand with support"
His speech/articulation and his cognitive skills appeared improved. In the meantime, three months later, the spasticity in his hands has decreased significantly. Nicolas does more with his hands than before, reaches for his spoon and tries to put it into his mouth, reaches for toys that we hold out to him, or smiles at us and is proud of himself. He is now training to stand with support, can briefly maintain a four-footed stand. His sitting is clearly improved; he will most likely be able to sit alone soon. We are especially happy that his attention is increasing as well as his desire to participate intensively in our life. We asked neutral persons, his pediatrician and his therapists, for their opinion; they all confirmed a pronounced improvement. Nicolas is still a severely handicapped child and has good and bad days, but he is making very good progress for his circumstances.
On adult, autologous stem cell therapy
We understand very well how difficult it is for parents to have to make such a decision for their child, especially as stem cell therapy is criticized so much and detailed, objective information is difficult to come by. But we believe that we made the right decision for Nicolas. The speed at which he is developing today is astonishing.
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