In 2005, Joe’s wife Natalie went into labour too early. Two months too early. “Our daughter Naomi weighed a bit less than two pounds,” says Joe. “She was in the NICU for approximately six weeks.”
Joe and Natalie watched Naomi closely as she grew. “She did hit most of her milestones, it just took her a little bit longer.” By age two she was walking, but she stayed up on her tippy toes and held her legs tightly together. “She would tire very easily and was constantly falling,” says Joe. “At the playground she was often sitting alone.”
Naomi was diagnosed with cerebral palsy (CP), a neurological condition that is caused by an injury to the brain around the time of birth. “It is a huge spectrum,” says Pediatric Neurosurgeon Dr. Richard Anderson. “You can have children with very mild CP that are completely functioning normally, and you can have children that are completely devastated. Typically children with cerebral palsy have motor problems and the majority have spasticity, which is increased muscle tone in their arms and legs.”
For Joe and his wife, coming to terms and accepting the diagnosis of cerebral palsy wasn’t easy. Joe went on the internet and searched everything he could about it.
“I wanted to make sure that we did everything that we possibly could for her,” says Joe. “I didn’t want to find out ten years from now that there was some treatment that could help her with her walking and we had missed that window of opportunity.”
In his search, Joe found videos of children with cerebral palsy before and after a specific surgical procedure called selective dorsal rhizotomy (SDR).
“Selective dorsal rhizotomy is an operation that has been in existence for probably over 100 years, but it has just been more elegantly done in the last 30 years,” says Dr. Anderson. “You tease out the nerve roots coming off the bottom of the spinal cord that are contributing to the spasticity in the muscles of the legs. Then you separate each root (it is like a bundle of spaghetti) into much thinner pieces and send a bit of electricity through each one. If you get a normal response from the muscle it controls, you leave it alone. When you get an over-reaction of the muscle or spreading to other muscles, that fiber is then cut. This restores more normal balance to the tone of the legs. It is the only permanent way to get rid of spasticity. There are studies 25 years out now that show that spasticity doesn’t come back after a rhizotomy.”
Most surgeons do this procedure through a long six inch incision in the back where they remove bone from five or six vertebrae (this part of the procedure is called a laminectomy) to access the child’s spinal cord and nerve roots. “There are only a few places in the country that do this procedure with a minimally invasive approach using about an inch and a half incision and a single level laminectomy,” says Dr. Anderson.
Dr. Anderson is the only one in the Northeast who performs the surgery this way. He is the director of the Multidisciplinary Spasticity Center at the Morgan Stanley Children’s Hospital of New York, where a pediatric dedicated team including neurosurgery, neurology, physiatry, orthopedic surgery, physical therapy, occupational therapy, nursing, social work, and orthotics evaluates and follows hundreds of children with spasticity.
Performing about 10-12 rhizotomies a year, Dr. Anderson says the outcomes have been excellent. “We have not had a single patient whose family wished they had not done a selective dorsal rhizotomy after the surgery. Of all the patients that I have, some of the happiest are children that had a rhizotomy because it makes such a huge difference in their quality of life.”
When Naomi was four years old, Joe and Natalie took her to see Dr. Anderson and the multidisciplinary spasticity team. “He was just very much the type of person you feel comfortable with right off the bat. He was wonderful. Couldn’t have met a nicer guy,” says Joe. After a thorough evaluation Dr. Anderson and the team decided that Naomi wasn’t quite ready for the procedure.
“When children with spasticity are growing up, they often use part of the spasticity to help them stand up while learning how to walk,” says Dr. Anderson. “Sometimes you are concerned that if you do a rhizotomy and take away that tone permanently, you could make it more difficult for them to walk temporarily. In the long term, however, the spasticity does more harm than good. Our team wanted Naomi to get a little stronger before we recommended the rhizotomy.”
A year later, when Naomi returned to see Dr. Anderson, she was ready. “We sat down with Dr. Anderson in the office,” says Joe. “He detailed exactly what would happen with the surgery, what we could expect, and he really put us at ease.” They scheduled the surgery.
In the early morning of May 16, 2011, Joe and Natalie brought Naomi to Morgan Stanley Children’s hospital.
“Dr. Anderson was incredibly comforting. We had such a sense of confidence in him, in the surgery he was about to perform,” says Joe. “I spent some time a few years back in Calcutta volunteering, and I had a little prayer book that Mother Theresa had signed. I knew it was somewhat superstitious, but I just asked him if he could just hold the book in his hand for a minute, knowing that it was his hands that would be performing the very delicate surgery and he obliged wonderfully.”
Dr. Anderson says,” Naomi’s surgery was perfect. It went beautifully.”
When his daughter woke up, Joe says,“I can remember actually flexing her ankles and just feeling how much more loose they were. They didn’t have that tightness that she had prior to the surgery.”
Two months after surgery Joe and his wife enrolled Naomi in Taekwondo. “Just the fact that she could keep her balance, that she could stand on one leg, it was remarkable. This past summer we enrolled her in ballet and tap too. I know Dr. Anderson genuinely delighted in the progress that Naomi has made and continues to make. He is a remarkable, remarkable physician.”
Naomi is now 7 years old and in the second grade. “She’s much more active both in and out of school,” says Joe. “She participates more with her peers both on the playground and on play dates.”
Joe and his wife took videos of Naomi before and after her surgery at ten weeks and a year. You can watch the video they posted on YouTube below.
“We were able, in large part, to make our decision because of the videos of other children we had seen. We felt an obligation certainly, for other families out there who are considering the surgery for their child, to see the possibilities.”