At Mater Hospital in Nairobi, 23-year-old Lucyline Kinya from Isiolo has been here for days, waiting for her daughter to undergo a heart surgery.
It all began when her daughter, who was six months old, started having chest problems and was diagnosed with pneumonia.
“When she was one year and two months I changed the hospital we were going to and went to Isiolo Referral Hospital where they ordered an X-ray that showed she had an enlarged heart. The hospital made another request for an echo test to be done," says Lucyline.
An echocardiogram, or "echo", is a type of ultrasound scan used to look at the functioning of the heart and nearby blood vessels.
The results showed her daughter had a hole in the heart, and the only treatment was to do open heart surgery as its effective in treating atrial septal defects.
“We didn’t have the 1.5 million that was needed to perform the surgery. and she had to wait until this year when her daughter was scheduled for surgery,” Lucy says.
She says it has been a long wait and that meanwhile she has had to take her daughter to the hospital twice.sometimes she can't breathe she has to be put on oxygen.
"When I was told she has a hole in her heart, I almost fainted and wondered why God did this to me. I am even afraid to give birth to another child because of what my daughter hasgoe through," she explains.
She is not the only one going through the agony. Clementino Obeli from Nambale in Busia County has had a similar struggle with the misdiagnosis of her grandson's condition.
We spoke to her while her grandson was undergoing open heart surgery at Mater Misericordiae Hospital.
Open-heart surgery is any type of surgery where the chest is cut open and surgery is performed on the muscles, valves, or arteries of the heart.
“When the baby was brought to me, he could not sit only squat and had to put fingers in his mouth to breathe. some told me the baby will die or be bewitched but I never give up," she says.
She says the grandson was always being misdiagnosed with malaria because his temperature was always high, but the problem never went away.
“I was told that the heart has fallen and I used traditional medicine to treat him with no reprieve.”
One day, community health workers from a Pentecostal church-related organization in Busia County visited her and identified what has been ailing the boy.
“They took me to Kisumu where we went to Aga Khan Hospital and Getrudes where they realized the heart had an issue and we were referred to Nairobi for specialized care.”
She was full of joy that her grandson would finally get the much help he needed to live a normal life
“I am excited that my grandson has undergone surgery and I am sure he is going to get better and I will focus on other things. My grandson will also be able to go to school and play like other children,” Clementino says.
Heart conditions vary from congenital heart defect which is a problem with the structure of the heart that a child is born with or Rheumatic heart conditions which is a critical form of acquired heart disease in children rheumatic fever, an autoimmune inflammatory reaction to a throat infection that can cause death or life long disability.
Some congenital heart defects in children are simple and don't necessarily need medical intervention. Other defects are more complex and may require several surgeries for several years.
“Most heart defects are hereditary and some with genetic defects or environmental factors like infections a mother goes through during pregnancy that can affect the baby's heart quite severely. But we can't blame or pin heart defects on anything they just happen,” explains Dr Terezia Tavacova, a paediatric Cardiologist
Serious congenital heart defects are usually identified soon after birth or during the first few months of life. Symptoms include pale gray or blue lips, tongue and fingernails, rapid breathing, swelling in the legs, belly, or areas around the eyes, shortness of breath during feeding -- leading to poor weight gain and fainting during exercise or activity among others.
“One of the commonest symptoms is if the baby is not doing well, not thriving, eating properly, they are not gaining weight as they should this is the first sign then later breathing problems and lung infections that’s why most babies are misdiagnosed with pneumonia," adds Dr Terezia.
Some of these heart defects include atrial septal defect where there is a hole between the upper heart chambers or atria. There is also a ventricular septal defect where a hole in the wall between the right and left lower heart chambers or ventricles is noticed.
Patent ductus arteriosus is a connection between the lung artery and the body's main artery or aorta. It's always open while a baby is growing in the womb, and typically closes a few hours after birth. But in some babies, it stays open. This causes incorrect blood flow between the two arteries.
And lastly, the total or partial anomalous pulmonary venous connection occurs when all or some of the blood vessels from the lungs or pulmonary veins attach to a wrong area or areas of the heart.
“Those with rheumatic heart conditions and problems with the valve where the blood is leaking to the left atrium always get valve replacement with a prosthesis one, but that option is not suitable for children as the valve does not grow when the child is growing so what we do we repair the valve,” explains Dr Peter Plasil an Intensivist.
According to World Health Organization, Five thousand children require congenital heart surgery in Kenya each year, but only a small number receive such interventions.
Annually Kenya performs around 120-150 congenital heart operations with a similar number of congenital catheter interventions.
Open heart surgeries are quite intensive as they require pediatric cardiologists, Anesthesiologists, cardiac surgeon, cardiac nurses, intensive care nurses and perfusionists to operate the heart lung machine to be al available
Unfortunately, most cardiac operations take place in Nairobi and partly Mombasa.
Approximately only Seven hospitals in Kenya are capable of performing open heart operation of which four are private. The public ones are KUTRRH, MTRH and KNH.
Congenital and also rheumatic heart conditions are treated better when diagnosed early through pre-conception screening or neonatal screening
“Heart defects are common in every country, but the difference is how can we deal with them. In the West there are a lot of opportunities to diagnose these kids quite early even before they are born prenatally, so they are born with a known diagnosis that is much easier to treat, but here medical services are not affordable and reachable making cases of congenital heart defects misdiagnosis high.” Says Terezia Tavacova a paedtriac Cardioligist
She says the only way to handle congenital heart defects is to create awareness and screening to curb cases early enough.