Gertrude's saves children's lives with free treatment

Diana tosses a gentle smile at me as she sinks comfortably in the black seat in a doctor’s office at Gertrude’s Children’s Hospital.

She glances at her mother before shifting her focus back to me. It is three o’clock in the afternoon and she has just taken her insulin dose.

Diana Nyambura was only four years old when she was diagnosed with Type 1 Diabetes Mellitus, a disorder that redirected her life’s course.

“My mum is the one who discovered it was diabetes and I was very young,” she says.

Her mother, Joyce Wanjiru, says her daughter’s deteriorating health at the time — excess urination, weight loss and weakness — alarmed her. Upon taking her to Kenyatta National Hospital (KNH), thinking that she was ailing from a kidney-related disease, she was shattered after being told it was diabetes.

“She was four years old. When I took her to hospital I thought she had a kidney problem because of her frequent urination. But at Kenyatta, the doctor said she had diabetes. I was in shock because I had always known diabetes only affects adults,” she recalls in a quivering voice.

The news sent her into depression, particularly when she was told her child was in critical condition with abnormally high sugar levels, and thus had to be checked in for observation.

Wanjiru experienced the first bout of the turbulent journey ahead, a sick child and financial strain.

The shy mother of three observes that her clothes-vending job, which was bringing in between Sh200 and Sh300 daily, was not sufficient to pull her out of the den.

Monthly, she would be required to fork out Sh10,000 for Humulin regular insulin for a minimum of three visits in addition to a consultation fee of Sh300 at KNH and Sh3,400 at Gertrude’s; if the child is not responding well to medication, then a check-up every two weeks would be needed.

Also, the patient is required to go for regular tests. Checking for glycosylated haemoglobin is Sh2,210, every three months at Gertrude’s; a diabetes hypothyroidism, thyroid function test costs Sh5,950; a glucometer for monitoring sugar levels costs an average of Sh300; and buying syringes and glucose strips. At KNH, they were only doling out insulin.

GERTRUDE'S FREE PROGRAMME

As fate would have it, at KNH she met doctors who referred her to Gertrude’s Children’s Hospital, where she could get assistance.

The hospital was running, and it still does, a programme called the Paediatric Endocrinology Training Centre for Africa (Petca) that sponsors children with endocrine disorders.

Diana was immediately recruited together with all the financial strain.

“There were doctors coming to the clinics at KNH. She was very young so they decided to help by telling me about Petca,” she recollects amid flashes of excitement.

Petca has been paying for the Form Three John Paul School student’s treatment and medication since she was four.

She says: “It was a heavy burden and it was lifted. At least I could breathe knowing that my parents would be able to pay for my school fees without worrying about my medication.”

Her mother adds, “Without the medication, things would have turned out differently. We thank God they have helped us.”

When Ms Wanjiru disclosed to her daughter that she had diabetes, the revelation sent Diana into a whirlwind of self-probing, doubt and lashing out at herself.

“It was very tough for me because the hardest part was when she told me I could not eat sugar,” she recollects.

Furthermore, she was drowning in self-denial, wondering “how come it chose me, how come it was not my brothers, how come in the whole family I am the only one?”

She adds that: “I used to do all manner of things. I ate sugar to kill myself, and I went out a lot to parties. I did not see the meaning of life.”

Fortunately, after visiting a psychologist, Diana, now 17, was able to accept her fate and was taught how to manage her disorder.

Petca was launched in 2007 at Gertrude’s Children’s Home, Nairobi, as a low-cost way of bridging the health gap of children with endocrine disorders, mainly diabetes, in sub-Saharan Africa who went undiagnosed, sometimes leading to deaths.

MORE THAN 1,500 CHILDREN TREATED

This sub-specialty’s training was not being offered locally in developing countries.

Since its inception, 1,700 children have been treated — 1,500 diabetic and 200 suffering from endocrine-related disorders.

“There has been a tremendous improvement in Kenya and sub-Saharan English-speaking countries since the Petca programme was started. The improvement noted is immense,” said Gordon Odundo, the hospital’s chief executive officer.

Dr Renson Mukhwana, a paediatrician at the facility, added that it is “a model idea that is the first of its kind in the world. A group of good people thought about how to improve the care of such people in the cheapest way. The ones we have trained are running successful clinics in their countries.”

Dr Mukhwana noted that African countries were sending people to Europe for training, which was costly and not very effective.

Consequently, the step taken by the European Society of Paediatric Endocrinologists to dispatch specialists in the field to conduct training to a large group at Gertrude’s was welcomed.

Since its inception, 54 doctors from 12 African countries — nine from Kenya — have been trained and 23 clinics have been established.

It is sponsored by the World Diabetes Foundation, the European Society of Paediatric Endocrinologists and the International Society of Paediatric and Adolescent Diabetes, with local collaborators, including Aga Khan University Hospital and Kenyatta National Hospital.

Additionally, Mr Odundo observed that the initiative boasts seminal achievements in managing the health of children with hormone and growth problems, partnership with the Ministry of Health on the Changing Diabetes in Children (CDIC) Programme (CDiC), and spurring the introduction of a joint paediatric endocrinology and oncology clinics every fortnight at Kenyatta National Hospital, in order to follow up on oncology patients and improved patient referrals to the endocrine clinics.

With its headquarters in Nairobi’s Muthaiga area, Gertrude’s Children’s Hospital was established in 1947 as a charitable trust and has 11 clinics spread out in different parts of the city.

Through its Gertrude’s Hospital Foundation, it manages the health needs of children in slums such as Mathare and Kirogoro.

PLUMMETING GRADES

Priscilla Lavitsa’s son suffers a similar fate. She says the boy, John Asmedo, born in 1998, “stopped growing” at age seven. Moreover, he had lost his appetite and whenever he was asked whether he was sick, the answer was no.

“I thought it was normal because when I used to ask him whether he is in pain somewhere he would say no. He was not able to finish a cup of tea or a mandazi,” she says.

But she brushed it aside, thinking it would die away. But sometime after the boy was admitted to Form One in Tala Boys, Mrs Lavitsa received a disturbing call from the school’s administration that her son was in a bad condition.

When she got there, the sixth-born had a swollen belly, “which was hard when you touched it”.

She took him to Amarula Hospital in Mathare North where she was asked to part with Sh56, 000 for surgery but when she said she did not have the money, her son was referred to Kenyatta National Hospital.

At KNH, they were unable to diagnose his ailment after several tests. Nevertheless, they recommended a colonoscopy, which cost Sh12, 000.

However, she says, another doctor halted the procedure and sent them to Nazareth Hospital, where they could get assistance. Sadly, they received the same outcome as in the previous hospitals and they were again sent back to KNH.

At the time, the 15-year-old’s grades were plummeting. “He used to be number one or number two. But when he was in class six onwards, he started failing and he was forgetting things very fast. Also, besides not eating, he hardly went to the urinals,” she adds.

Recalling how she used to sit him outside their house in Huruma at night when his body temperatures would shoot up almost brings her to tears.

John always experienced heavy breathing, and had a swollen neck and feet.

Besides other children being frightened by his puffed-up body, his mother would buy a size 43 trouser and cut it into a short for him to fit in.

After being tossed around to different health facilities, the mother of eight met a doctor who referred her to Gertrude’s Children’s Hospital.

RARE CONDITION

The boy was diagnosed with congenital hypothyroidism, a condition that results from low secretion of thyroxin by the thyroid gland.

It is responsible for physical growth and development, body metabolism, and brain development. The thyroid is located in the neck area.

“Some babies are born with a thyroid that is not producing enough hormone. What we call congenital hypothyroidism. If you do not produce enough thyroxin as a child it is likely to affect your intellectual growth. It will affect your physical growth because the hormone we call thyroxin controls most bodily functions,” Dr Mukhwana explains.

"If you don’t have enough, your body slows down, you have no energy. You cannot grow well, so a lot of them are very short."

The hospital has been treating John, who is now a Form Four student at Eastleigh Boys, and has seen an improvement in his growth. “It was a dream,” his mother says jovially.

The county worker used to earn a measly Sh8, 000 monthly at the former city council, though she now earns Sh32,000.

The endocrine is a system comprising glands that produce hormones that control body functions. Endocrine disorders emanate from either underproduction, overproduction or lack of production of hormones.

For example, Type 1 diabetes in children is caused by lack of insulin production, while in adults, Type 2 diabetes is as a result of non-effective production.

What triggers the disorder is not known. Nonetheless, Dr Mukhwana explains that “why it happens is still not well understood but what is clear is the majority of such children have self-destructive cells that produce insulin, which is located in the pancreas.”

The symptoms of diabetes include frequent urination, weight loss, exhaustion and thirst. Insulin regulates blood glucose levels, which is used for energy production.