The birth of a new child is a joyous moment. And that was certainly the kind of elation that came with Jean Claude Ngirinshuti when he arrived on earth in November 1997. But that joy was short-lived as doctors immediately diagnosed the young Ngirinshuti with a hole in the heart.
But the boy never manifested any strange behaviour until only recently. This disease has seemingly dashed all his parents’ hopes that the second-born would grow into a healthy and productive son.
A dark cloud has been all over ever since doctors informed them that their son was born a ‘blue baby’ (born with a hole in the heart).
His father, Timothy Uwizeye, says he has now lost any hope for his son’s future, and adds that the young boy’s life could come to a sad end any time should the family continue to fail to secure him treatment. But at the back of his mind, Uwizeye remains hopeful that God could bring a miracle and give them a way out.
“Maybe someone out there can help save my child’s life,” he lamented.
Ngirinshuti, now 11, does not eat much, and his illness has made him look younger than his real age. His eyes have turned yellow and he looks very weak. According to cardiologists, Ngirinshuti is living a very delicate life with heart defects.
Doctors say that a hole in the heart is when there is an opening in the wall (septum) between the chambers of the heart. It may be between the two top chambers (atria) or the two bottom chambers (ventricles).
Any of the two is very dangerous and that is the state Ngirinshuti is in. And despite the fact that he was born in a high-class hospital (King Faisal Hospital), Ngirishuti’s family is financially incapacitated to save his life.
His father, Uwizeye, is a house keeper and earns Frw30,000 (about $55) with which he buys food for the family, pays rent, and foots tuition fees for four other children.
“The doctors told me that he will have to undergo an open heart surgery and that the operation can only be conducted when he is a bit older,” says Uwizeye.
This has, however, created a state of uncertainty for the father-of-five because the doctors did not tell him the appropriate age for the surgery; neither did they estimate how much money would be required to save his son’s life.
At the time of Ngirinshuti’s birth, his father was working as a porter with SDV Transitra, a transport company which had promised to take care of the child’s health. But the company never lived to its promises and later fired Uwizeye.
Uwizeye says his son is rarely in an upbeat mood, although he sometimes plays with other children. The father added that before Ngirinshuti dropped out of school early this year, he was a brilliant pupil. He explains that Ngirinshuti dropped out of school after his health deteriorated.
“I always had hope until January 7, 2008 when he started collapsing. I took him to Kibagabaga Hospital but doctors there transferred him to CHUK where he was diagnosed with the same disease,” said Uwizeye.
At CHUK, Ngirinshuti was given medication which did little to improve his health. The young boy was by now unable to sit on a desk in class and could not keep awake for long hours.
And although the school is only 500 meters away from their home, it always took Ngirinshuti three hours to reach the school, his dad said.
“He would take a few steps and then sit, take another few and sit. That was his experience everyday.”
Doctors at Nairobi Hospital reportedly said that it takes a whopping Frw15 million (approx $ 28,000) to treat the child’s disease.
After hearing that, Ngirinshuti’s father is now seeking financial support from well wishers to raise the funds for his son’s treatment. He has no hospital in mind.
“My family and I are financially handicapped to foot this bill,” the father says.
Normally a patient with a ‘hole-in-heart’, medically called Ventricular Septal Defect (VSD), has little time to live unless he undergoes an operation to fix the defect.
Quite often, an unborn baby is known to have a hole in the heart (a congenital condition), when it’s found out that its heart is not growing proportionately with the rest of the body.
Because of the hole, the flow of blood through the heart is abnormal and doctors say that this makes noises in the heart.
Cardiologists also say some holes in small babies may close by themselves, while others need to be closed as they represent a significant danger to the child’s life.
The treatment of a hole in the heart is done via an operation called Catheterisation during which a cardiologist puts a device in the heart to fit into the hole.
When it’s in the right place, the device opens like a little umbrella, and blocks the hole. The device stays inside the patient forever.
“This is quite a quick and simple way to solve the problem”, a doctor said. “However, sometimes this is not possible, because of the size, shape or position of the hole.”
In these more complicated situations, a surgeon will perform an operation where he puts a patch over the hole directly.
Anybody wishing to assist Ngirishuti may contact his father on cell phone number (+250) 05147551.