Tunisia RPCVs Sondra and Bill Bechhoefer raise their daughter with Type I diabetes
Juvenile Diabetes- One Family's Story
by Sarah Hillegass
Rachel Bechhoefer is an active 22-year-old student at Bennington College in Vermont. Her parents, Sondra and Bill, met in the Peace Corps and have traveled extensively, even while raising Rachel and her older brother David. Rachel has had adventures hang-gliding, caving and rock-climbing, and attended boarding school in New Hampshire for her last two years of high school. These pursuits would be healthy challenges for any young person. For Rachel and her family, they are welcome indicators that Rachel's Type I diabetes, which she was diagnosed with 15 years ago when she was just 7, has taken a backseat to her enjoyment of life. Today, dealing with her disease has become routine, posing almost no limits on Rachel's options. The relative ease with which she manages her diabetes is made possible by the immense amount of work that she and her family have done to understand and meet the challenges of the disease, as well as by technological breakthroughs in its treatment.
After some pants-wetting accidents when Rachel was 7, Sondra made an appointment with her doctor to have her checked for a urinary tract infection. On the way to the doctor's office, Rachel complained that she was very thirsty, as she had several times in the past few days. The doctor tested Rachel's blood sugar level, which was remarkably high, and she was diagnosed with Type I diabetes. She was sent to the hospital for treatment and stabilization and remained there for nearly a week, while Sondra attended classes at the hospital to learn how to care for her daughter. Suddenly, a new chapter in their lives had begun.
Type I diabetes mellitus, also called insulin-dependent diabetes, occurs when the pancreas stops making the hormone insulin, which allows the body to use glucose for energy. Without insulin, the body cannot use energy from food, and the cells experience a kind of starvation. The body begins to burn stored fat for energy and creates toxic substances called ketones, which collect in the blood and urine. Unused glucose builds up in the blood and gets channeled to the kidneys, causing excessive thirst and frequent urination to flush out the kidneys. In order to restore the system to balance, diabetics need insulin injections. Balancing a diabetic's insulin level, food consumption, and exercise level can be extremely difficult. A typical person's body constantly provides the perfect amount of insulin to enable the body to absorb food energy in the system, but a diabetic must judge how much insulin is needed. Before the insulin pump became available, this insulin had to be injected in several daily doses and therefore did not supply the constant stream of insulin that the body really needs.
Diabetes is a difficult disease for anyone to manage, but it is even more challenging when it affects a child. Sondra feels that their family had been fortunate that Rachel was 7 when she was diagnosed. (A neighbor's son was 2 years old when he started needing treatment for Type I diabetes.) Sondra says, "My attitude all along was that we needed Rachel's cooperation." So from the beginning, Rachel tested her blood sugar level at least five times a day by pricking her finger and collecting blood on a test strip, and Sondra or Bill administered Rachel's twice-a-day insulin shots. The family had to adopt a regimented daily schedule for snacks and meals and weigh Rachel's food to ensure that she ate the right amount of carbohydrates. That summer, Rachel and her parents went to a family diabetes camp to help them learn to deal with the new challenges they faced, and Rachel returned by herself the following year. After that summer, Rachel took over her insulin shots.
Despite careful management of her insulin shots, snacks and meals, Rachel experienced many dangerous incidents in the first years following her diagnosis. If the insulin level in the bloodstream is too high for the amount of glucose present, a diabetic will pass out. Rachel and her family discovered that physical exertion threw off their calculations about her insulin requirements. During the first two years, she passed out 10 times, often after exercise. The Bechhoefers were careful to educate her teachers, camp counselors and others about diabetes and what to do if Rachel began to pass out. In many instances, adults would revive Rachel by placing something sweet like cake icing in her mouth to elevate her glucose level. Several times Sondra had to revive Rachel with a shot of glucagon, a hormone that causes the liver to release sugar into the bloodstream. Throughout this period of adjusting to the challenges of diabetes, the Bechhoefers were committed to Rachel having a normal life, and Rachel participated in activities like summer camp and Girl Scouts.
As she and her parents worked on balancing her insulin, food and exercise levels, Rachel began to experience periodic convulsions. Her doctor diagnosed her with "Petite Mal," a type of epilepsy, and she was put on epilepsy medication. However, another doctor consulted for a second opinion believed the convulsions were related to the diabetes, particularly because they always happened just before lunch, when insulin levels were higher compared to the food energy in Rachel's system. A third doctor suggested putting her on medications to control the convulsions for two years and then discontinuing them if she had no further episodes. The Brechhoefers chose the third approach, and also changed one of Rachel's insulins. Finally Rachel's condition became more stable and manageable.
In many cases the Bechhoefers had to weigh contradictory advice from doctors to make the best choices for Rachel. Sometimes, they made choices that were not doctor's orders at all based on what they were learning about the specifics of Rachel's physical needs and lifestyle as well as additional reading and research (Diabetes Interview magazine was a particularly useful source). There is no easy way to know how to best manage the extremely complex task of providing insulin to the body; it varies from person to person, from sunrise to sunset and from year to year.
In sixth grade, as Rachel reached puberty, things "went haywire" says Sondra. Her blood sugar level became dangerously low at night and then very high in the morning. Some nights, depending on Rachel's blood sugar level before bedtime, Sondra tested it several times during the night while Rachel slept, waking her to drink fruit juice if her blood sugar level dropped too low. Sondra continued doing nightly tests for three years, sometimes as often as five times per night. Stress also affected Rachel's blood sugar level. The worst reaction Rachel had was before her eighth grade play, when hormonal fluctuations of puberty and stress combined with a dangerous effect. Sondra did not check Rachel's blood sugar one night near the time of the play. In the morning, Sondra found Rachel wandering around upstairs in the house. "She wasn't there." Sondra says. She tried to give Rachel a glucagon shot, but Rachel would not let her. Sondra had to call an ambulance to take Rachel to the hospital. She didn't revive for over five hours.
Rachel and her family tried to reduce these kinds of problems through the frustrating, time-consuming and frightening process of trial-and-error. Providing a constant and more exact amount of insulin became significantly easier when Rachel got an insulin pump in ninth grade. As a result she was able to participate in more activities away from home and even went to boarding school. The pump is small, about the size of a beeper, and she wears it around her waist under her clothes. Rachel still tests her blood four to six times a day by pricking her finger and using a small test strip to find out her blood sugar level. Then she programs the pump to provide the correct amount of insulin. The pump provides the insulin through a tube that is attached to the fat layer around Rachel's waist. A small needle in the end of the tube retracts after attaching the tube, which has to be changed every two to three days. Although Rachel still has to calculate how much insulin she needs, the pump gives her a much greater level of control and a better means for delivering the insulin to her body in a constant flow. This eliminates the highs and lows in blood sugar level she experienced when she had just two to three shots of insulin a day. "At a certain point it just becomes routine. My control now is pretty good. It's pretty easy to live my life and not really think about it," says Rachel.
A parent facing her child's Type I diabetes encounters myriad challenges. Of scheduling the family's day-to-day activities, Sondra says, "Diabetes sort of became the focus of life." And, of course, the disease can be extremely frightening. "From the time she was diagnosed, every night I would go to bed wondering if she would be alive in the morning. Every morning the first thing I would think was, ‘Is Rachel still alive?'" Sondra found that it was important for her to get support through a parent group, which she found through the Juvenile Diabetes Research Foundation, to educate herself and her family and to enlist Rachel's cooperation in all aspects of managing her diabetes. Together, the Bechhoefers got through the very difficult adjustment to childhood diabetes, and today Rachel has all the opportunities that her parents had hoped she'd have.
Sarah Hillegass is Coeditor of "All Kinds of Kids."
