Congenital Heart Disease (CHD) remains the world's most common birth defect. [iStockphoto]

At birth two years ago, all seemed normal with baby Hopenovell Sasha. 

However, shortly after leaving the hospital, her parents began to notice some worrying symptoms that included nasal congestion. 

Whenever they took her to hospital, she would be treated for 'ordinary' ailments ranging from the common cold to malaria.   

Her father, Ambrose Ochieng, narrates that they assumed the 'frequent infections' would go away within months as the baby's immunity improved.

However, when at nine months, Baby Sasha started developing unexplained swelling.

Today, the family is struggling to afford even a single meal after medical tests showed that her daughter was born with a hole in her heart.

“It has been a journey in and out of hospitals. She has been admitted so often for the management of her condition,” Dr Ochieng says.

Dr Naomi Gachara, a Pediatric Cardiologist, explains that the condition, is a congenital disease, meaning the child was born with it.

“It could be genetic and, in some cases, the cause may not be known,” Dr Gachara explains.

Data from the World Health Organization indicates that Congenital Heart Disease (CHD) remains the world's most common birth defect, affecting approximately 1 in 100 children.

In Kenya, the Ministry of Health estimates that more than 200,000 children under the age of 18 years suffer from heart disease with over 10,000 babies born with CHD each year.

Gachara explains that if it is a small hole, one doesn’t need to go through surgery to close it, as a majority will close without any medication.

Larger holes would have a toll on the growth of the baby.

The child would present poor weight gain because they get tired and keep having interrupted breastfeeding.

“For smaller babies, mothers may be required to express milk and feed the baby using a cup. Babies don’t get tired when using the cup as it is 'mouth and swallow' and this helps them gain weight,” the paediatric cardiologist says.

She points out that a big hole in the heart contributes to the blood flowing into the lungs and blood being a very good medium for infections, the child keeps getting frequent and severe pneumonia which, again, pulls them backwards in terms of weight gain.

A baby with a heart defect may have frequent chest infections, sweat a lot, have quick breathing and their lower chest would sink in.

“In some children, the holes don’t change so they have to go for surgery so that the hole can be closed surgically,” Gachara states.

When baby Sasha was taken to Kisii Teaching and Referral Hospital where she was admitted for one month, doctors managed her condition with drugs. An echocardiogram test conducted on her revealed that she had a hole inside her heart.

“They also found some fluid-like substance in her heart,” Mr Ochieng says.

Her parents were referred to Tenwek Mission Hospital for specialised treatment where she was again admitted for one month.

This is when her parents were told that the heart surgery she needed would cost Sh1.2 million. 

However, the hospital recommended that the condition is first managed until the fluid-like substance goes away.

“The hospital advised us that we could take our daughter to a hospital near their home which had oxygen and we could also give her the drugs,” Mr Ochieng narrates.

Before they could take Baby Sasha back to Tenwek Mission Hospital for checkup, her condition worsened and they had to have their daughter admitted at Migori County Referral Hospital where she stayed for close to two months.

Baby Sasha relies on constant oxygen support which is administered three to four times a week from morning to 3pm. The situation has been difficult for Mr Ochieng who lost his job as a casual labourer in April last year. He says he had to sell his five cows, 13 chickens and a structure where he had put up a shop.

He used part of the money to buy an oxygen cylinder after the cost of admission became unbearable for them. They now administer the oxygen to Baby Sasha from their home in Masara area, Suna West Sub-County.  

Dr Gachara explains that babies are put on oxygen when they get pneumonia or an infection.

“Once the pneumonia resolves, they should go home and continue with the heart failure medication,” she says.

The paediatric cardiologist points out that cases, where a child may require oxygen support, may depend on the complexity of the heart because most holes may not be straightforward.

“They may be complicated by other reasons in the same heart,” Gachara explains.

Dr Paul Olik who coordinates Non-Communicable diseases in Migori County says though the condition may not be managed at the county’s primary level facilities, its management involves medical interventions where symptoms are treated as they are.

When they present symptoms as cyanosis which is a bluish discoloration of the skin due to poor circulation or inadequate oxygenation of the blood, the patient is put on oxygen.

“Drugs like brufen which may be considered helpful in the closure of the (small) hole in the heart, are administered,” Dr Olik explains.

He recommends that, in severe cases, the hole is closed using surgical intervention.