Rural Tenwek Hospital saves children one heart at a time

James Ruto, was born with a potentially fatal heart complication five years ago.

He is the third-born child of Gladys Chepringuk, 42, who has two other children.

For a week, Gladys has camped at a rural mission hospital in Bomet, South Rift, seeking any help to correct the defect.

He was born with a congenital heart defect (CHD), the most common health condition. It affects the heart’s structure and how it pumps and works.

It can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild, such as a small hole in the heart, to severe, such as missing or poorly formed parts of the heart.

It affects one in every 100 babies born in Kenya. Each year, more than 10,000 babies are born with CHD. Surgery is often necessary.

James has been under treatment for five years.

The Ministry of Health estimates more than 200,000 children under 18 years suffer from heart disease.

Last week on Wednesday, James and his mother went to see a cardiothoracic surgeon at Tenwek Mission Hospital.

“We have waited for some time but I am happy that today we shall see the doctor. I was told I can get help here faster than at other facilities,” Chepringuk told the Star at the hospital.

Lack of access to cardiac care in Kenya, means many of these children do not live past early childhood.

The Kenya Centre for Disease Control says heart failure in children is a common cause of morbidity and mortality, with high socio-economic burden.

More prevalent among boys more than girls, congenital heart complications, just like rheumatic complications and anaemia, can lead to heart failure.

At Tenwek Mission Hospital, cardiothoracic surgeons are striving to save the lives of children with CHD and rheumatic heart diseases, one heart at a time.

On the day we visited, the queue was long and many had come to see cardiothoracic surgeons.

Children were crying in the waiting bay, some just months old.

Some children had come for a review while the majority were in for the first time after referral to specialists.

Emily Koskei, a mother of three, had brought her four-year-old daughter, Lily, for review.

Unlike Chepringuk’s son, who is yet to undergo surgery, Koskei’s daughter was treated and is at the hospital for a routine checkup.

“I am happy. Without these doctors, I don’t know where I would be today. Perhaps my daughter would have died a long time ago. I thank God for the doctors at Tenwek Mission Hospital,” Koskei said.

Her daughter was diagnosed with a heart disease, a condition in which the heart valves have been damaged.

According to the World Health Organization, rheumatic heart disease is the most commonly acquired heart disease in people under age 25.

There is no cure for rheumatic heart disease and damage to the heart valves is permanent.

Patients with severe rheumatic heart disease will often require surgery to replace or repair the damaged valves.

In Kenya, the condition affects one in seven children and is responsible for 70 per cent of newly diagnosed cardiac conditions in pregnancy, according to the WHO.

Koskei’s daughter’s condition was discovered at birth and she was advised to see a specialist in Nairobi in 2021.

She was then working as a casual labourer at a factory in Industrial Area that was closed down at the height of the Covid-19 pandemic.

Koskei is a single mother whose husband ran away immediately after the child was born. She hoped for a miracle when she left Nairobi for her parents’ home in Mulot.

“I just came with my daughter and a small sack with a few clothes. My husband had packed and left for his rural home as well and until today, we don’t talk. Maybe he thinks Lily died,” she said.

Lily’s health deteriorated. Luckily, her uncle advised her to visit Tenwek Mission Hospital and handed her Sh3,000.

The hospital restored hope to Koskei who had then given up.

Since Lily’s surgery, the girl has been doing tremendously well.

“I give glory to God and may he bless these doctors here,” her mother said.

Hundreds of children with heart complications have undergone successful surgeries at the hospital, most from humble backgrounds.

Because of the long waiting list, many have to endure weeks in the queue.

Heart surgery is expensive and a long wait can lead to death.

Some hospitals estimate a single operation costs between Sh500,000 and Sh1.2 million, depending on the condition. Mission hospitals usually charge less. The hospital has a kitty for the destitute.

Here it is a matter of life and death as parents who have children with heart disease wait to get a slot in the theatre.

Anne Waithera, a mother of one, said she realised her son Davis had a heart disease after birth.

David was not breathing properly and so doctors discovered he had a heart condition.

“Immediately he was born, he was not breathing properly and that is when the doctors told me that something was wrong with the heart,” she said.

Waithera said parents go through agony given the fears, anxiety and pain they endure when dealing with children with heart complications.

“Most of us cannot afford the cost of treatment and surgery, which means they have to wait longer. Heart surgery is an expensive undertaking,” she said.

Arega Fekadu, a cardiothoracic surgeon at Tenwek Mission Hospital, said poverty is driving hopelessness among parents.

The hospital is swamped with little heart patients.

“Poverty is the biggest challenge here given that we are in a rural set-up where the majority of residents are extremely poor,” Fekadu said.

Just last year, medics raised concerns over the rise in the prevalence of heart disease in South Rift, which covers Samburu, Baringo, Nakuru, Kericho, Bomet and Narok counties.

Other cardiothoracic surgeons at Tenwek hospital said the burden of cardiothoracic diseases that require surgery is high, not only in the South Rift but countrywide.

“Every year about 10,000 patients require open heart surgery; out of those about half, 5,000, are children younger than 13, cardiothoracic surgeon Dr Keith Dindi, said at the hospital.

Out of the 10,000 patients that require heart surgery at the hospital annually, only 500 are operated on.

This is less than five per cent of all the patients that are in dire need of surgery.

“What is heartbreaking for us medics is that every year we don’t operate on all the patients. That waiting list has patients who die waiting for surgery,” Dr Dindi said.

Tenwek is the foremost and single largest provider of cardiac surgery in the region and beyond.

Dr Fekadu said over the years, they have developed significant capacity as well as high-level infrastructure. “We are passionate about changing the story; we want to see more patients getting these surgeries, changing the world one heart at a time,” he said.

The doctor said the most common indication for surgery at Tenwek Mission Hospital is rheumatic heart disease.

This is caused by a strep throat infection in a young child that is not appropriately treated.

Dr Fekadu said this eventually leads to severe heart valve damage, which can only be mended surgically with valve replacement or repair.

Medics at Tenwek Mission Hospital are working to reduce the incidence of preventable rheumatic. It is the leading cause of preventable death due to heart disease.

The other large category of patients are suffering from congenital heart disease.

Anne Waithera from Turbo said her son was operated on.

“Last week, the boy went through surgery and is now fine. It has been tough but I am happy I finally made it through the long waiting list. I urge parents not to hide their children with heart diseases because most of them are treatable,” she told the Star.

Fred Okinda is a beneficiary of Tenwek cardiac surgery fund, a kitty established by the hospital.

“My son was operated on and I did not pay anything because the hospital paid for me,” he said.

The hospital’s compassionate cardiac surgical fund has helped many needy patients pay their hospital bills.

Congenital heart defects are the most common type of birth defect in babies.

Signs and symptoms

The type of heart defect a baby has will determine the signs and symptoms he or she will exhibit.

They can range from blue-tinted nails or lips, fast or troubled breathing, tiredness when feeding and sleepiness.

The Centre for Disease Control and Prevention cautions that some defects will have little to no symptoms and may require a professional medical diagnosis to spot them.

The baby may also have bluish discolouration of lips, fingers or tongue, recurrent chest infections with rapid or difficult breathing during activities and poor weight gain.

The baby may have swollen legs, hands and abdomen, or swelling around the eye.

Causes of congenital heart defects

Some congenital heart defects usually start to develop during the first six weeks of pregnancy.

This is when the baby’s heart begins to develop, form a shape and begin beating.

The actual causes of heart defects are unknown, but there are certain risk factors that have been shown to predict the occurrence of heart defects.

For example, if there is a family history of heart defects, there will be a two to three per cent chance of having a child with a congenital heart defect.

Prescription medications for illnesses such as epilepsy can also result in congenital heart diseases in expectant mothers.

Mothers with a viral infection like rubella during the first trimester of pregnancy are more likely to give birth to a child with a heart abnormality.

In addition, expectant mothers who consume alcohol or illegal drugs during pregnancy are at an increased risk of having babies with heart disease.

Women suffering from diabetes or obesity have a high chance of giving birth to children with a congenital heart defect, while problems with genes or chromosomes, such as down syndrome, can also be another risk factor.

Diagnosis

One way a child’s heart defect can be suspected is through listening with a stethoscope during a routine clinical examination.

The doctor will hear a heart murmur, which is a prime lead to the possibility of a heart defect.

This sound could be a blowing, whooshing or rasping sound.

A heart murmur is an abnormal sound that occurs when blood flows through the heart or blood vessels fast enough to make the sound or murmur that is heard during the auscultation examination with a stethoscope.

The CDC said some congenital defects may be diagnosed during pregnancy.

This is done through a special ultrasound exam known as a foetal echocardiogram.

This exam creates ultrasound pictures of the heart, enabling cardiologists to make an examination based on the developing foetus.

There are some heart defects, though, that will not be detected until after birth or even until later on during childhood or adulthood.

Treatment and costs

Treatment will depending on the type of defect

In some cases, a baby may only need one heart surgery. In others, the baby may need multiple surgeries to repair the heart or blood vessels

According to the CDC, some heart defects can also be treated without surgery.

This is done through a cardiac catheterisation.

A catheter or tube, is threaded through the blood vessels into the heart, where the doctor can take measurements and pictures, do tests or repair the problem.

In some cases, heart defects are not fully cured.

However, blood flow and heart functioning are greatly improved to allow the child to live as normal a life as possible.