COLUMBIA — For the past two years, the Snow family has looked to a new and promising source of treatment for their son’s neurological problems: stem cells found in donated umbilical cord blood.
Michael, 8, suffers from disabilities caused by a brain injury that happened during his delivery.
During a breach birth in a Connecticut hospital, a doctor used forceps. They slipped and Michael’s skull was fractured and his cerebral cortex was damaged. The injuries affected his ability to speak, move and even sit up straight without assistance.
Since then, his parents, David and Lisa Snow, have explored a wide variety of treatments and therapies for his problems. They have traveled to Florida and other states to find doctors who can help him.
Michael has received four injections of cord blood stem cells at a clinic in Tijuana, Mexico. The Snows travel first to California, then go with Michael by medical transport to the Mexican clinic after picking up a dose of the donated cells provided by anonymous donors.
They decided to try the treatment after David learned about it through research and attended a conference on neurological disabilities. Michael received his first dose of stem cells in 2006.
Research in recent years has focused on the possible regeneration of damaged neural cells by cord blood stem cells. The key element in this treatment is that with cord blood cells, as with adult stem cells, no embryos are destroyed. It’s an important factor for this devoutly Catholic family.
“It was an experimental thing and I wanted to make sure it was ethical,” Snow said.
“The treatment had been used with some success in children with cerebral palsy, so we met with researchers and decided to go for it,” he said.
“We wanted to do everything we could and explore everything we could for Michael,” Mrs. Snow said. “What’s sad about the whole thing is this treatment shouldn’t be so expensive, and people shouldn’t have to leave the country to try it. I wish researchers were doing more to look into cord blood stem cells. It’s been left behind by other research.”
Snow said Michael was having severe problems with tremors prior to one of the treatments, and improved after receiving the cells. He has also had some improvement in his eyesight and other functions, but still remains unable to walk or perform other tasks without assistance.
“We didn’t get the miracle we hoped for when we tried the stem cells, but we saw some improvement, and we’ve seen others who have been helped in a big way by the treatments,” Snow said.
The years have meant sacrifice and hard work for the couple, who also have two daughters, Amanda, 16, and Sabrina, 14. Michael’s needs affect nearly every part of the family’s daily life, and even played a part in the house they selected when they moved from Connecticut in 2007 for Snow’s job with Blue Cross-Blue Shield.
Their house has a wide front hall, expansive downstairs living space, a customized door that can accommodate Michael’s wheelchair, and special exercise equipment. The couple sleeps downstairs in a bedroom near Michael’s room so they can quickly respond to his needs.
Snow said doctors initially gave them little hope and encouraged them to send their baby to a hospice rather than seek further treatment for him. At first, Michael had no sucking reflex and could not eat on his own.
“It’s amazing how quickly some doctors give up. They made us feel like he was taking up space and needed to move on,” Snow said.
Through prayer, the Snows decided to seek further treatment and to accept whatever God had planned for their son.
“We took a leap of faith. I’m a very simple person and I felt if Michael were going to die, at least he would be given love,” Mrs. Snow said. “He would know love and be given love in the time he had. Choices like this are life and death decisions, and I had a motherly feeling that I wanted him to be in my arms.”
The Snows’ instincts were correct. Michael needed help initially to eat, and has other physical needs, but Mrs. Snow said his neurologist and other doctors say he is a healthy 8-year-old otherwise. His height and weight are both in the median range for his age. He has an expressive face, large dark eyes and thick brown hair which waves over his forehead.
The family belongs to St. John Neumann Church and regularly attend Mass. Mrs. Snow said Michael responds to the music and the sounds of the liturgy. He has been able to receive the Eucharist in the past.
Mrs. Snow home-schools Michael for several hours on weekdays, using curriculum for special needs children provided by the South Carolina Independent Home School Association. They exercise, listen to music and explore other subjects. Music is one of Michael’s favorite things, and he responds to different songs with gestures and smiles.
Snow said he wants to continue to explore different options for his son, and thinks cord blood and adult stem cells will play a key part in the future treatment of people with neurological disabilities.
“I really pray about upcoming stem cell treatments, and I wish there was more emphasis in this country on this research,” he said. “You can’t wait forever when you have someone with a strong need like Michael’s.”
Mrs. Snow also prays for new treatments and grows in her faith through her daily work with her son.
“There is a special simplicity that is Michael, because for him a simple task can be difficult,” she said. “God is present in my work with him because I see the hidden and powerful blessings in what he accomplishes. The silence I feel with Michael is the same I feel when I go before the Blessed Sacrament. You realize God is talking to you.”