The Observer (Kampala)

5 February 2013

Uganda: 1,000 Born With Heart Diseases Annually

One family's struggle to save its lovely boy

At her small house in Kyengera, Sarah Nagujja, a mother of five, has been limited to doing one job - monitoring her pale five-month-old son, Charles Kaddu. Occasionally, she looks on helplessly as the little tot struggles for his breath, then he sweats and later part of his body either freezes or turns purple. And this happens on a daily basis. But all Nagujja could do is to pray that God gives her son another day on earth - ever since he was diagnosed with two holes on his heart.

"He is like this every day, fighting for his life," she says.

Now and then, Kaddu's father, Charles Kaddu, a boda boda cyclist, checks home to see if his son is still alive.

Happiness turns into big cross

Though Kaddu was normally delivered at Lubaga hospital, with a normal weight of 3.5kg, the parents' happiness was short-lived when doctors sensed a problem with his respiration - he was breathing through the mouth. It was discovered that Kaddu had been born with blocked nostrils which needed an operation at Mulago hospital.

"The doctors at Mulago hospital were very helpful and my baby had a successful operation," Nagujja says. But Kaddu had to spend his first three weeks on earth under intensive care - feeding through his veins.

"It was very trying for me to spend three weeks without breastfeeding my child," Nagujja recollects.

Even when they were discharged, Kaddu continued showing signs of difficulties with his breathing.

"By his third month, he had problems with suckling because he was using more of the mouth than the nose in his breathing," Nagujja says.

This condition called for another operation. But this operation could only be done to a child who is above five kilogrammes - unfortunately Kaddu, who had been born with 3.5 kilogrammes, had now deteriorated to 3 kilogrammes. With such weight, the chances of surviving a surgery were minimal. And to make matters worse, scans at the heart institute indicated that Kaddu was born with a boot-shaped heart.

A medical report from Uganda heart institute indicates that Kaddu had 'pulmonary Atresia with large VSD, several MAPCAs, supply pulmonary circulation and large secundum ASD.' In simple terms, Kaddu had two holes in his heart and the heart was too big for his size. According to the Dr Twalib Aliku, there are many cases like this at Mulago, where over 1,000 children are annually born with such congenital heart diseases.

He says when a baby is born with Pulmonary Atresia with VSD, they can either go for open heart surgery or BT-shunt surgery - where they don't stop the heart, but the chest must be opened to access the pulmonary arteries and place a conduit. But this surgery must be done for babies within the first days to weeks of life which means that Kaddu's case will require an open heart surgery - necessitating him to go to India since it can't be done in Uganda.

Aliku says chances of survival depend on the hole size, whereby some holes close as the child grows and others expand with growth.

Surgery in India

Though Mulago hospital recently received equipment for heart surgery, Kaddu's case could not be handled in Uganda. They were, therefore, required to raise $15,000 (Shs 43m) and go for surgery in India. With Kaddu's complications, irrespective of the pain, the doctors advised that he should not be given any medication - since that would weaken him more.

The little tot, therefore, has to bear the pain until the parents raise the required money for the operation - something that will not come easy for a boda boda cyclist and housewife with almost nothing to sell.

"He lives in great pain. When he starts crying, you just have to look at him because a mere shake inflicts pain on his heart," narrates the father. Though he is a man, Kaddu admits that he sometimes breaks down and cries with his child.

"This is the biggest cross God could ever give me," he adds.

The Kaddus are calling on all good-hearted Ugandans to come to their rescue.

"I don't want to watch my boy die. I pray some people can come to our rescue," says Nagujja. They have an account in Equity bank under the name of Charles Kaddu 1012100568497 or someone can send help through mobile money on 0704-831985.

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