Woman's struggle with son who was diagnosed with hole in the heart

NCDs are caused by an imbalance in the metabolic system. [iStockphoto]

Penina Cherop, a single mother of two, has been seeking medication for her three-year-old son who was diagnosed with Down Syndrome and congenital heart defect.

Cherop, 39, earns a living peddling carrier bags and fruits in Nairobi’s Dandora. Life, she says, has been tough for her as she struggles to buy drugs for son Abraham Nyawa and pay school fees for her older son in Form Three.

Nyawa was born a healthy baby until two months when breathing difficulties and high fever started.

Cherop rushed him to a nearby clinic but was referred to Mbagathi Hospital or Kenyatta National Hospital (KNH).

Doctors at Mbagathi Hospital said he had chest congestion and his oxygen level was low.

“He was put on oxygen and more examinations showed he had Down Syndrome,” she said.

He was admitted for a month with little oxygen level improvement.

Persistent fever saw Nyawa, then five months old, referred to KNH where an echo scan showed he had a hole in the heart that would be repaired when he turned three or four years.

“I have been taking him for regular checkups and buying medicine at Kenyatta every month,” says Cherop.

The boy is now three years nine months.

She has been trying to raise funds for his surgery at Tenwek Hospital where volunteer doctors treat children with heart diseases.

Cherops’ biggest challenge is getting finances as economic conditions have not improved since the Covid-19 pandemic.  

Because of her son’s condition, she cannot leave him at home.

“He needs my full attention at all times. He has not been able to sit down until now and if left lying on his back he rolls over, so I am forced to carry him on my back while doing my business,” she told The Standard.

With her meagre income, Cherop’s son sometimes goes without medication as she needs Sh6,000 every month for his drugs.   

Cherop is among Kenyans bearing the burden of treating Non-Communicable Diseases (NCDs), including sickle cell, cancer, diabetes, kidney and heart disease which can be chronic and expensive to manage.

As a result, the Non-Communicable Diseases Alliance of Kenya (NCDAK) has appealed for increased financing, which has stagnated at a pitiful one to two per cent for the last two decades, causing senseless deaths besides pushing millions into extreme poverty due to health care costs and disability.

NCDAK Executive Director Catherine Karekezi says NCDs need to be prioritised as they’re among the leading causes of death and disability globally.

Dr Karekezi argues that the investment on NCDs are hardly commensurate with the disease burden.

“As a country we need to invest on the prevention and control of these diseases to ensure victims can access treatment and care at an early stage,” she added.

Most NCDs, she adds, are life-long conditions that affect the economically active age group, suggesting that if the government fails to invest in them, it suffers loss by paying for medication and missing out the productive age group that would be beneficial in growing the economy.

“NCDs are caused by imbalance in the metabolic system,” she explains.

“These conditions can lead to diabetes, cause blindness, stroke, heart attacks and even amputation if not managed at an early stage. This means ones livelihood can be altered completely.

NCDAK has also urged the government to create awareness by training health care providers at the grassroots level and equipping health facilities with tools and knowledge to identify the diseases at an early age.

NCDs result in high cost of treatment and Karekezi insists focus should be on treatment and care while rolling out the universal Health Coverage Programme.

“The government should have packages to ensure people get treatment without exorbitant fees as most are not treated because they cannot afford the cost,” says Karekezi.