When diabetes strikes your 10-year-old

Diagnosing a child with a chronic medical condition can be depressing for parents.

Last year, Nicholas and Diana Tayebwa saw their world crumbled when the first of their three children was diagnosed with diabetes.

Diana is a human resource officer at the Uganda National Oil Company (UNOC).

She shared the story of their 10-year-old daughter, Elizabeth Birungi, as she navigates through life with a difficult disease.

The parents noticed that Birungi was losing weight even when she was eating well, playing well and doing house chores with no bother.

She was, however, not complaining of any pain or sickness. It never occurred to them that something was amiss in her life.

Shortly after, Birungi developed a dry cough. In spite of several hospital visits and treatment, the cough progressed into general body weakness.

Soon, Birungi started complaining of lack of energy whenever she woke up to prepare for school. "I would nag her to stop being lazy, though she was not that kind of child. I still did not smell a rat," Diana says.

It was later, on October 13, last year, when Diana was travelling out of the country. As she dragged Birungi out of bed for school with her siblings, she noticed the girl did not have energy at all. From the bathroom, she fell back on her bed.

Later, at school, Birungi became weaker and was sent to the sickbay. The nurse gave her glucose to help her gain some energy, but this only helped her to complete the day.

The next day, her dad had to sweet talk her to go to school. But later in the day, the nurse called him to pick Birungi up and take her to hospital.

The heartbreaking news

At the clinic, Nicholas was told that his daughter was highly dehydrated. She was put on a drip. Worse still, her sugar levels were very high at 22 mmol/L. Normal sugar levels should be between 4.5-7.

She was admitted at Nakasero Hospital, where further tests showed that she had diabetes and was immediately put on insulin. Nicholas feared to break the news to his wife, who was in the UK at the time.

However, when she talked to her daughter, she blurted it out, though she did not know what it meant.

"It was a bombshell, the least I ever thought of. My mind was jammed with questions. How on earth could a nine-year-old be diabetic?" she remembers.

Birungi had Type 1 Diabetes, which is an autoimmune disease, where the person's pancreas stops producing insulin by itself.

This means the body cannot control its sugar levels, so one has to get insulin by injection in order to stay alive. "This condition is scary and the responsibility can be demanding," she shares.

Diana's mind quickly stressed over injecting her daughter daily. From that, she worried about the diet and how to get the right care at school and home.

Most importantly, how her daughter would cope with diabetes.

"I explored the internet but the information was overwhelming. The more I read, the more I lost my head," she recalls.

Nicholas was taken through the amount of insulin to give his daughter before meals and how to measure the sugar levels.

She was also given a meal plan that stipulated the foods she had to eat and portions.

Back home

The first days at home were very hard. They had to strictly follow the meal plan, which contradicted Birungi's tastes.

For example, she would be tempted to take a whole apple, yet the meal plan showed a quarter.

" We also gave insulin at every moment and measured the sugar levels while taking records," she recalls.

More to that, the couple had to buy a glucometer, stock on insulin and injecting pens.

"It was overwhelming. We bought all those things we did not have before and we had to learn to use them," she adds.

Managing depression

Diana says they had not heard of any diabetic cases in their families.

Many friends and family members who learnt of their plight would recommend solutions, some of which were misleading and overwhelming.

They visited several doctors with the hope that it was a condition Birungi would outgrow, but all tests confirmed their fears.

They had to accept and move on. "We decided to take a step at a time and learn more about this condition which our daughter is to live with for the rest of her life," she explains.

On the flip-side, however, Diana said the more information she got, the more equipped she was to deal with the situation, but sometimes this information would so be depressing, especially when she got to learn the adverse effects the disease can have on the child.

"I almost broke down physically and emotionally," she says.

However, today, the couple focus on the positive. They do not look at the dark side of their daughter's condition. To them, diabetes is not a limiting factor to Birungi's future.

It cannot stop her from living a full life. They began by encouraging her to listen to her body to know if the sugar levels are dropping or rising.

"The biggest hiccup was managing the emotions. It was so tough. She was so emotional that everything or comment made her cry," she recalls. Birungi also kept wishing she was like other children.

Getting used

Getting used to injections was another challenge. Before diagnosis, Birungi and her mother used to fear injections so much, but they had now become part of her life.

"The first time I injected her, my hands shook badly and my heart was racing," Diana remembers, adding, "The way she quickly got used to the jabs was so amazing that she now does it on her own."

Birungi draws her blood to measure the sugar levels before injecting herself. She also counts the amount of carbohydrates in her food to ascertain the amount of insulin she needs.

Meanwhile, the couple had to take their daughter through a tough talk to fully embrace her condition.

"She would ask when the injections would stop. We told her it was for the rest of her life until a cure is found," she reminisces.

There were also frequent meltdowns and resentment.

The couple allowed Birungi to express her anger and anxiety that she would always burst in tears.

"We would just look at her because we did not know what to do. I would also cry my heart out until I grew strong to encourage her that she can still live a fulfilling life," Diana remembers.

The family also had a temptation of bringing sweets for their youngest son, who loved them. They feared for Birungi seeing them, yet she could not have them.

However, along the way, they learnt that she can eat anything as long as she gets insulin.

Diana says they also learnt that the meltdowns are one of the side-effects of the insulin.

It makes someone emotional but there has been more acceptance. "We helped her to understand that she can still do the things she was doing before, such as swimming and playing," she says.

We have been supported The couple has managed to cope, thanks to family support and being open about their daughter's condition. The more they talk about it, the more they heal.

"My husband is so supportive. He wakes up in the night to measure Birungi's levels and give her a snack, where necessary," Diana applauds.

She also got in touch with parents of other diabetic children, who encourage and guide her whenever she hits a snug.

"My managers have been there for me. They have allowed me time to go through this all while encouraging me," Diana says.

"Even our families have not forsaken us. Birungi will always have a relative to take care of her when I need to take a break." She has embarked on creating awareness about diabetes to help parents and children come to terms with the condition.

At Birungi's school, the administration and nurse monitor and help her to manage her sugar levels. She is always reminded to measure and inject herself.

"We have had a good year. She has not fallen sick or missed school. We treat her like her siblings, only that she has to watch what she eats, measure her levels and inject herself," Diana shares.

Birungi's eight-year-old brother has also learnt to measure and inject his sister if the need arises. Birungi moves with her medical kit bag wherever she goes.

Financial implication

The couple spends about sh400,000 monthly on insulin and sh45,000 weekly on testing kits. They also buy glucose tablets, fruits and snacks, among others.

BIRUNGI SPEAKS OUT

Birungi, who goes to The North Green School, says she can now draw blood from her fingers onto a test strip and also inject herself with insulin.

"I have to check my sugar levels several times a day, before every meal, snack or if I am not feeling well. I wish there was a cure for diabetes. I do not like living with the condition or seeing other people with it. But this is how we are going to live," she says.

She advises other children to watch their lives for symptoms of low blood sugar levels.

"These include sweating, hunger, blurry vision, dizziness, trembling, weakness and palpitations. Those for high blood sugar include fatigue, frequent thirst, headache, dry mouth and frequent urination," she says.