The Packards gather around the boulder in their backyard to pose for the picture. Katie passes her bright pink crutches to her mother, and although she needs them to get many places in her life—from school to hip-hop dance class, she’s able to lean against this rock without them.
The photos go well, of course, because the Packard family—mom Cara, dad Brian, brothers Dan and Kevin and sister Laura—is so tightly knit. They’ve come together in ways small and large to help Katie navigate life with spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain.
But once the photo shoot is over, the rest of the family scatters across the backyard while Katie is still leaning.
“Mom,” she calls, “can you hand me my crutches?”
There she is, a 12-year-old girl, balanced precariously on the edge of the rock, stuck between childhood and adolescence, independence and dependence—between the desire for a regular life and the reality that there are simply things her body can’t do.
Katie’s balancing act is common among those with spina bifida. The condition occurs in utero when the development of the spine goes awry and the spinal cord is left exposed. Sometimes the defect is small, sometimes it’s large. Surgery can close the defect, but there is usually nerve damage that leads to problems with movement, the bladder and even the brain. The impact on the brain can result in learning disorders or hydrocephalus, an imbalance of fluid in the brain that can lead to extreme enlargement of the head, progressive brain damage and even death if it’s not treated.
Since spina bifida affects so many parts of the body in so many different ways, children with it often require care from more than a dozen Children’s Hospital Boston specialists in disciplines as diverse as neurology, orthopedics and urology.
“A lot of people from a lot of different services are dedicated to these kids,” says Lawrence Karlin, MD, an orthopedic surgeon who is involved with Children’s Spina Bifida Clinic. “We have people doing interesting and very innovative things here, and we’re trying to develop support groups. We’re trying to do the best we can for them.”
Since the ways in which spina bifida impacts children are so varied, many innovators zero in on specific aspects of the condition, like neurosurgeon Benjamin Warf, MD, who invented a procedure to better treat hydrocephalus. The standard treatment is to insert a tube called a shunt underneath the skin that allows built-up fluid to flow from the brain and into the patient’s abdomen, where it’s absorbed into the body. Warf developed a procedure where an opening is created inside the brain that allows the trapped fluid to escape, and then the part of the tissue that produces the fluid is cauterized. Rather than reroute the built-up fluid, Warf’s method stops it from developing at the source. The results have so far been positive: “Our patients tend to have fewer headaches, and it cuts down the number of operations and days they have to stay in the hospital,” says Warf. “These things make a huge difference in their lives.”
For her part, nurse practitioner Rebecca Sherlock, PNP, is trying to address the emotional impact of spina bifida by focusing on the self-esteem needs of girls with the condition. She recently debuted a project called Better Living ‘N Girls (BLING) Camp, which brought together 10 girls between the ages of 10 and 17 to sleep over at the Omni Parker House in Boston. The weekend included games and activities to promote healthy eating and fitness, Reiki massages to restore a sense of balance and relaxation, and makeovers with manicures, makeup and hair styling.
“Adolescence in difficult enough,” says Sherlock. “Then you can compound that for kids with chronic disabilities like spina bifida. It takes them out of being part of their own peer group.”
Sherlock’s goal with BLING Camp was to create a peer network for girls with spina bifida, to let them know there are other girls like them and help them form new friendships and bonds. The girls participated in some healthy pampering, while learning how to improve their healthy eating and physical activity. “At the end, one mom was in tears because her daughter told her how much fun she was having,” says Sherlock. “It’s just not something she gets to hear very often.”
Katie Packard was one of the attendees that weekend, and her mother, Cara, was thrilled with the outcome. “The girls were beaming and laughing, and another mother told me she hadn’t seen her daughter that happy in a long time.”
It’s clear to anyone who talks to Katie that she’s full of the confidence and optimism that Sherlock is trying to instill. Sometimes, when her body doesn’t want to cooperate, it’s her spirit and ingenuity that keep her going. One of Katie’s favorite activities is hip-hop dance, so she was sad last year when, after one of her many surgeries, she realized she would be unable to participate in the dance routine that her teammates were working on.
“I didn’t think I was going to be able to do any of the dances,” Katie says. “I couldn’t twist and stuff, so it was hard. But my coach came to me one day and said ‘Katie, I have a dance that you can do.'” With her coach’s help and a little perseverance, Katie and a few of her friends on the team arranged chairs on stage and danced to Beyoncé’s “Single Ladies” while sitting down. “I was so happy not to miss that performance,” she says.
The stage isn’t the only place she excels. Despite extended absences from school while she recovers from surgeries, Katie is a good student. She prepares for her absences by bringing work home with her, often going the extra mile on projects just to keep up. Despite missing an entire unit on Egypt while she recovered from surgery last winter, Katie created a book of relevant topics about the country instead of taking a typical in-class exam.
Anyone wondering where Katie’s wealth of confidence and drive comes from need to look no further than her parents. Cara is the president of the Spina Bifida Association of Massachusetts, and Brian is the treasurer of the national chapter of the association. The first time Brian approached the association, he was astounded at how much support it was lacking. “I was the only non-board member that went. I thought, oh my gosh, people have to step up here.” Now, Katie and her parents participate in nationwide conferences that attract hundreds of families of children and teens with spina bifida.
It may seem like it takes a village to get patients to the place they need to be, and in some cases it does. World-class doctors invent surgeries that change the face of medicine and team up to treat individual needs. Families give all the support and love they have. But mostly, it takes a strong will and positive energy like Katie’s to do more than just walk every day.
“We decided early on that we were never going to take the approach of ‘Why us?’ It’s not productive,” says Brian. “We tried from the very early days until today to make sure that Katie takes that confident approach. We realize the miracle that she is. We celebrate that every day.”