Chesapeake Wood: ‘Full of Smiles’
September 2009 Issue
Imagine the heft in your hand of a Harry Potter hardback, a small bag of sugar, or -for those of more extravagant tastes-a silken pouch holding 21 troy ounces of gold coins. Each of these comes in at less than a pound and a half. Got it? That is what Chesapeake Wood, now 10 years old, weighed when she was born.
|Chesapeake Wood poses with her brother, Tom. Photograph courtesy of Day Iseminger.|
"I was 25 weeks pregnant when I went into labor," says Day Iseminger, Chesapeake's mother. "I had been pregnant with twins in a single placenta. When I went into labor, and stayed in labor for four days, I knew I had lost one of the twins, but the doctors wanted to hold out as long as possible to give my daughter a chance to survive."
Monochorionic twins, twins that share the same placenta, are vulnerable to twin-to-twin transfusion syndrome. That is, the twins share a circulatory system, with one twin typically becoming the recipient and the other the donor. Even if the recipient twin survives premature birth, the combination of the strain on an overworked heart and lungs and low birth weight mark the start of a long trip home.
"From the beginning, she had problems with her heart and lungs," Iseminger says. "She weighed one pound, seven ounces and had to be on a ventilator. She stayed in the hospital for three and a half months, but from the beginning, she was responsive. She would hear my voice and look for me."
Having come to term in the hospital, Chesapeake went home with a lot of equipment for a baby girl.
"She was on oxygen for a month," Iseminger says. "Then she was on an apnea monitor for another three months. Through it all, she was a happy kid. Full of smiles. The doctor had told us that we would face some physical problems, but no one told us to expect cerebral palsy."
In fact, it was not a doctor who diagnosed Chesapeake's condition. It was the nurse practitioner who was examining her before a scheduled eye surgery. Chesapeake fit the profile for cerebral palsy (CP), one of an array of complications that come with premature birth and low birth weight. In addition, between 40 and 50 percent of all preemies who develop CP had an identical twin who died early in the pregnancy. The diagnosis comes without a cure, but other interventions abound, and intervene they did.
"Ches was almost three when we got her diagnosis, just about the time she was ready to start school," Iseminger says. "So we got her a walker, started physical therapy, and found a school in West Chester [Pennsylvania] with a Step Up program."
Step Up is designed to prepare children who are diagnosed with a language delay and/or a developmental disorder for successful inclusion into the kindergarten world. The plan was always for Chesapeake to be mainstreamed.
"She stayed in the program for a total of three years, but mainstreamed into an affiliated nursery school after only a year. We were encouraged because she worked on such a high level," Iseminger says. "She was doing physical therapy, and it was at that time we met Frank Caruso, CO, who has become her orthotist and friend."
Caruso, who practices at Boas Surgical in West Chester, has now worked with Chesapeake for four years, adjusting her bracing, monitoring her increasing reliance on her walker, and helping her return to crutches assisted by some new technology. She describes him as a "very nice guy who does my braces."
Caruso explains that Chesapeake's standard course of treatment has been based on a bilateral Cascade DAFO system. She began with a number 2 hinge with plantarflexion stop with forefoot wrap and total immobilization.
"Initially, she used crutches more, but in the past year she has become more debilitated in her gait and walking," Caruso says. "We noticed that she has had to rely more on her walker and that her feet have started to form forefoot eversion, flat-foot deformities, and fixed rear-foot eversion."
Caruso adjusted her DAFO system to correct the deformity of her feet, but Chesapeake was not able to maintain wearing them without appreciable breakdowns or sores.
"Her ability to walk has been decreasing as she has gotten older, and I wasn't happy with that," he says. "She was doing less and getting worse. Without regular, daily use of legs and feet, the muscles don't develop properly and the feet become more deformed. She needed to be on crutches both for muscle strength and because she goes to public school."
In October 2008, Chesapeake had surgery to release her hamstrings and lengthen her Achilles tendons.
"She was in casts for six weeks and then kept wearing her leg immobilizers after that when she slept," Iseminger says. "It was very successful. She was like a new kid."
It was after the casts came off in December 2008 that Caruso decided to try a different intervention.
"With her mom's consent, we decided to go with a SMO system to control the deformity of her foot with open plantar flexion. In addition to the SMO system, we incorporated the new KiddieGAIT by Allard USA," he says.
KiddieGAIT belongs to the ToeOFF family of products introduced in 1997 for adults and has been on the market for about a year. Iseminger recalls that Caruso suggested the plan after returning from a conference where he had learned about the equipment and was excited about it.
"We kept getting requests for small sizes for kids," explains Carol Hiemstra-Paez, director of customer satisfaction at Allard USA, Rockaway, New Jersey. "But it took a lot of research to get a handle on how children move. Children are hard on equipment, but the carbon-composite material is lightweight and holds up well."
From Caruso's perspective, the energy-reflecting properties of the device were what Chesapeake needed to encourage a more dynamic gait.
"You have seen the Flex-Foot prosthetics that amputees who are runners use," he says. "They act as shock absorbers, give back energy, and reduce fatigue. The KiddieGAIT works in a similar way."
Caruso explains that this brace allows controlled motion and stress, which gives Chesapeake stabilization at first rocker with gait through mid-foot stability with the SMO (created to control the position of the foot) and then allows a dynamic response through third-rocker toe off.
And has it worked?
"She was phenomenal!" he says. "Her balance improved, her heel-to-toe gait improved, and the device has given her some dynamic return to her muscles to keep them working."
He adds that the controlled motion encourages soft-tissue stretching, muscle stimulation, bone development, and circulation instead of cutting all these off with immobilization. In addition, the system-by not immobilizing the lower limb-allows for better stability through her core by letting certain muscles turn on in a kinetic chain.
"She is now able to move back into her forearm crutches," Caruso says. "Her speed of gait has increased as well as her overall strength. Her therapy has now continued, and her mom, nurses, and physical therapists have all been very impressed."
Chesapeake is on the move again in the company of her parents, her orthotist, her physical therapists, and her secret weapon: her brother Tom.
"Tom was born a year and two weeks after Ches. I think we might have treated her as more disabled if we hadn't had Tom. He knows her limitations, but he is very good to her and helps her be part of things," Iseminger says. "He is in the same grade. They ride the bus together, go to school together, and go to summer camp together. After she had her surgery, he would go to her classroom during recess to stay with her."
Tom is clear about his brotherly responsibilities.
"I help her get on the bus," he says. "I get her walker collapsed and stuff. I do a lot of that at school."
For now, no cure for cerebral palsy exists. But there are increasingly effective technologies that can treat and prevent many of the complications arising from CP's effects. At 10, Chesapeake paints her fingernails bright red, knows all about the secret life of Hannah Montana, and dances the Macarena with abandon and delight
Jane Albritton is president of Tiger Enterprises, Writing Consultants. She is a contributing writer for the Northern Colorado Business Report and Edibles Front Range. She is also an editor for a 50th Anniversary collection of Peace Corps stories. She can be reached at www.peacecorpsat50.org