Heather Boore is a nurse, diabetes educator, and manager of the Pediatric Diabetes Resource Center at Children’s Hospital of Illinois. She’s also the mother of a diabetic daughter.
Boore said she’s wanted to be a nurse since she saw what a difference they made in her own childhood. “I was in the hospital frequently as a child with my asthma, and the nurses were the best part about being in the hospital. I’ve always had a passion for the care of children and have had several jobs where I’ve worked with children in the health care setting.”
But it was her daughter’s diagnosis that steered her health care career into diabetes education. “My daughter, Cecilia, was diagnosed with Type 1 diabetes in October 2001. Obviously, my husband and I were devastated, and I struggled to cope with the diagnosis of my three-year-old little girl. The following Sunday, the position I have now was listed in the newspaper. I saw it and shrugged it off, and then my husband saw it and said I should apply. I actually waited four weeks. I figured if it was meant to be, God would keep that position open. A month later, I was offered the position. It was the best decision I’ve ever made,” she said.
She began working in the Pediatric Intensive Care Unit in fall 1999 and the Pediatric Diabetes Resource Center in January 2002. “I oversee the day-to-day functions of our department of seven, which includes two RNs, three registered dieticians, a social worker, and our secretary,” Boore said. “I also see patients in our center who are coming for diabetes education and spend quite a bit of time on the phone answering questions parents have on the daily care of a child with diabetes. I travel to area schools that have children with diabetes to educate people on how to care for them safely as well.”
She said the Pediatric Diabetes Resource Center is an American Diabetes Association-recognized education center—and the only pediatric diabetes center outside of Chicago or St. Louis. “So we have patients who come from all over central Illinois to see one of the four pediatric endocrinologists and the diabetes team we have here at Children’s Hospital. Not that I’m biased, but we’re extremely unique and very specialized with the experts we have on our diabetes team. Five of our eight-member team are Certified Diabetes Educators through the American Association of Diabetes Educators.”
Children newly diagnosed with Type 1 diabetes are referred to see one of the four pediatric endocrinologists and are followed by the team, Boore said. “We see children from birth through age 18—and sometimes until their first or second semester in college. Once a child is diagnosed, the education begins. She needs to know how to check blood sugars, administer insulin injections, and what to do for a high or low blood sugar. That’s just the beginning. As time goes on, she needs to learn how to care for diabetes when she has an illness, how to manage blood sugars during sports or exercise, educating and teaching family members to care for their child, teaching the schools what to do, etc.”
It’s not a one-time education, however. “Diabetes is a lifetime, chronic disease children and their families need to learn to care for as they grow and make appropriate changes in insulin,” she said. “We also educate children and families on different ways to manage diabetes, either with injections or insulin pump therapy. An insulin pump is a device worn 24 hours a day, and it continuously injects insulin into the subcutaneous tissue of the skin. The site where the insulin goes into the body is changed every couple of days, and we instruct the child and family on how to do this. We teach them how to recognize patterns in their blood sugars and make appropriate changes in their care.”
Boore said the Resource Center also serves children with Type II diabetes. And while they’re seeing a small increase in these cases, it’s not as much as national statistics would imply. “I believe the pediatrician or family physician often feels more comfortable managing it since it doesn’t involve insulin. However, a referral to one of our physicians could benefit the patient and family because it will educate them about Type II diabetes and how to manage it appropriately. We have an extensive weight management curriculum, and it involves the whole family. To be successful in managing Type II diabetes, the whole family has to be on board with meal planning, healthy eating, and incorporating exercise into the daily routine. It’s a change in lifestyle.”
Many people know there are two types of diabetes but aren’t sure what, if any, differences there are. “Most children diagnosed with diabetes are diagnosed with Type 1, where their bodies stop making insulin all together, and they need to take insulin through an injection. As one can imagine, it can be a daunting task to tell families that they need to give their child a minimum of four injections a day for the rest of their lives. With Type 2 diabetes, the body makes insulin, but it isn’t able to use it appropriately, and it often can be managed by diet, exercise, and pills.”
She said one of the other struggles of children with diabetes is caring for it at school. “Many schools in our area don’t have a budget for a school nurse, so the office secretary becomes that person. It’s necessary that the school provide a safe environment for a child, and this means someone has to be able to give insulin injections to keep that child safe. Many of the schools in this area are very supportive.”
One misperception she often confronts is the issue of sugary foods. “A lot of people think because you have diabetes you can’t have sweets. This isn’t the case. Our kids can be kids just like everyone else; we don’t want to single them out. We calculate insulin based on the amount of total carbohydrates they eat. So if they have some ice cream with lunch, it’s okay as long as they get insulin for it. Also, sugar-free doesn’t mean carb-free. For example, sugar-free ice cream actually has more carbohydrates than regular ice cream. We obviously endorse a well-rounded, healthy diet for these kids, but we don’t restrict them from any type of food,” she said.
Boore said right now is a very exciting time in the world of diabetes, including some proposed concepts that may increase a diabetic’s quality of life. “Obviously, my hope for our patients and my daughter is a cure. That cure doesn’t seem that far away—just far enough away to rely on hope. There’s the concept of a closed loop system where a person would wear an insulin pump that delivers insulin, and a continuous glucose sensor would monitor the blood sugars without the need for finger stick testing. There’s the potential for islet cell transplantation. Islet cells are the cells in the pancreas that produce insulin that stop working in a person with Type 1 diabetes. Maybe one day, you could just go in every couple months for your islets. Then there’s stem cell research with both adult stem cells and embryonic cells. The potential in this arena is very exciting, although controversial. My hope is that by the time my seven-year-old daughter is an adult, she’ll be able to say, ‘I used to have Type 1 diabetes.’”
To aid in that goal, Boore is passionate about raising money and awareness for the Juvenile Diabetes Research Foundation (JDRF). “Last year, a group of volunteers attracted 2,000 walkers to our first annual walk and raised an incredible $237,000 for JDRF, which is committed to research to find a cure for Type 1 diabetes. This year, our 2nd Annual Central Illinois Walk to Cure diabetes is September 17.”
She said the best aspect of her job is helping families going through a diabetes diagnosis. “I can be there not only to educate them about diabetes, but also to comfort them as a parent of a child with diabetes. I have a connection that’s so special and creates a bond that only parents with a child with a chronic disease can have.”
One of the most challenging parts of her job is relaying to these kids and parents that this disease will be with them for the rest of their lives, she said. “They won’t outgrow it, they can’t take pills, and diet doesn’t cure it. Insulin injected into the body is their lifeline. The other challenging part is to do diabetes all the time. We ‘do diabetes’ at home, and I ‘do diabetes’ at work. But I know it is where I’m meant to be. ” TPW