FEB. 24, 2014

A family affair: Maintaining normal, active lives with multiple diabetes

BY DIANA WALSH

Courtesy of the Bergh family description of photo

The Bergh children. Maleki (left) and Marae (second from left) have type-1 diabetes, but it doesn't put a damper on their activities.

The Bergh household, with five children under age 11, is an unusually hectic place. Besides the usual schoolwork, baseball practice, gymnastics and piano lessons, there is an added complication: Two of the Bergh children have diabetes, and a third is likely to develop it in the next two years. Yet mom Tierra Bergh manages to maintain relative calm in her family's San Jose home.

"I want my children to know that this disease is not going to tear them down. They are leading normal, healthy lives," she said.

Both Maleki, 11, and Marae, 8, have type-1 diabetes. They each must inject themselves with insulin as many as eight times a day and prick their fingers up to 15 times a day to monitor their blood sugar levels. In an effort to better maintain their glucose levels, Tierra Bergh also tracks each gram of carbohydrate the two children eat. Every night, either she or her husband wakes at 3 a.m. to measure the kids' blood sugar. If necessary, they adjust the levels by getting them to drink some juice or by giving them a shot if their sugar levels are really high.

It all seems routine now, but when Maleki was diagnosed with diabetes at the age of 3, Bergh wasn't sure she'd be able to manage her child's disease.

Early support system

Maleki was practically in a diabetic coma when he arrived in the pediatric emergency room at Stanford Hospital & Clinics in May 2005. After Maleki spent several days in a hospital, the Berghs took him home with an assortment of insulin and syringes and a phone number that gave them 24-hour access to doctors at Lucile Packard Children's Hospital Stanford.

Although they had been trained with detailed instructions about how to care for Maleki, Bergh said they were terrified during their first few days back at home. What if they made a mistake? What if they couldn't get his sugar levels right? The ability to call a doctor at any time of the day or night gave them both the time and the confidence to adjust to monitoring their son's complex and life-threatening disease.

"I was freaking out. I remember calling them and saying, 'He's refusing to drink his juice; what am I supposed to do?'" she said. "They just kept reassuring me that I was doing a good job, and they really gave me strength. This is a huge disease, and the doctors were a huge support system for us."

Testing positive

Roughly 5 percent of families who have one child with diabetes will have a second child with the disease, but it's unusual to have three, according to Bruce Buckingham, MD, professor of pediatric endocrinology at the School of Medicine.

Buckingham, who treats the Bergh children at Lucile Packard Children's Hospital Stanford, assessed everyone in the family for the disease by testing for antibodies that can generally predict when a child is going to develop diabetes. Four months after Maleki got his diagnosis, Marae tested positive for the antibodies. She did not get the disease for five more years, but by then Tierra Bergh knew what to do. After noticing that Marae was drinking and urinating excessively one weekend, she used her son's glucose meter to test Marae's glucose levels and immediately called Buckingham.

"I was devastated," she recalled, "but Dr. Buckingham was very calm. He said, 'You already know how to take care of a child with diabetes.'"

He sent them to the closest emergency room. As they arrived, Buckingham was on the phone giving treatment instructions for Marae to the emergency room doctors. Tierra and Michael Bergh took Marae home with them that day and began their new routine, now managing type-1 diabetes for two children.

"It was emotionally and mentally draining to have two kids with diabetes," said Tierra Bergh. They since have learned that another daughter, Jaeda, 5, has several of the antibodies, indicating that she is likely to get the disease in the next few years. Daughters Sienna, 9, and Averie, 2, are tested annually for the antibodies but so far have no signs of the condition.

Active participants

Through it all, Buckingham and Stanford Medicine care teams encouraged the Berghs to make their kids' lives as normal as possible, Tierra Bergh said.

Two years after his diagnosis, Maleki started playing baseball. He now plays shortstop and pitches for a traveling baseball team and was selected to the regional all-star team. Marae takes gymnastics with her older sister, and both have weekly piano lessons.

Buckingham said he's always impressed by how calm and relaxed the Berghs seem when they come in for visits. "Some people find it overwhelming, but they seem to be incorporating it and living good, active lives," he said. "The parents have a wonderful attitude, and it's transferred to their kids."

Buckingham said the Berghs' willingness to have all of their children participate in multiple diabetes studies has been a tremendous help for research. Even with her family's busy lives, Tierra Bergh said, she will always make time for the studies that may someday find a cure for her kids.

"We have completed about five studies, but it feels like 100 because I have all five of my kids participate," she said. "I participate because I want them to find a cure. That's my main goal."


Diana Walsh is a freelance writer.

Stanford Medicine integrates research, medical education and patient care at its three institutions - Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children's Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu/.

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