Young Prince had to wait seven years to have a sister. But his family is worried that Cassey Chilumpha, born on May 3, may be gone soon.
Medical doctors say she may not live two more months unless she gets specialist treatment abroad.
“We haven’t told Prince about her condition. We just want him to enjoy her company while it lasts,” said the mother, Elizabeth when I visited their home at Chiwengo in Kasungu.
She is a police officer stationed at Kasungu Boma while her husband, Evans, works with the Tobacco Control Commission (TCC).
The Chilumphas, in their 30s, are losing hope.
As we wrapped up the interview, Prince alighted from a school bus, waved his colleagues and rushed into the living room to cheer his baby sister. He is excited to have her alive.
“Soon we’ll be going to school together,” the boy said excitedly as tears wellep up in his mother’s eyes.
Her birth brought them joy, but not anymore.
Elizabeth broke the silence: “We love Cassey, and it’s painful when we think about the cost of trying to keep her alive. We don’t understand why God could give us such an incomplete gift.”
The baby was born with a malformed heart which has two holes that need to be sealed. The parents need almost K7 million to undergo treatment at Narayana Cardiac Hospital in Bangalore, India.
The defect means the blood from the body to her heart gets mixed, with that from the heart to the head.
According to doctors, the girl cannot live for more than six months in her current condition.
“The scans done locally indicate that Cassey needs immediate attention, but the expenses stand in her way now. We can’t raise the money in time to save her. Only God knows,” said Evans.
According to him, the K7 million quotation from India does not include travel, food and lodge.
Interestingly, good Samaritans have raised K7.5 million to save the girl.
The swift response comes a month after the shocking death of Faith Mwangonde, six, who required K10 million to undergo medical treatment in India.
Friends of Faith—the deceased Kawale-based girl diagnosed with an inborn error of metabolism, at Kamuzu Central Hospital in Lilongwe.—have contributed K1.5 million to Cassey’s cause.
This lessens the inner fears of the baby’s parents.
“In public, we put on brave faces for Prince’s sake. In the bedroom, we cry. But the encouragement from family, friends and strangers keeps us strong and hopeful,” says Cassey’s father.
The girl has a bony protrusion on her back and her wobbly neck contains massive flesh. Her parents were told these are effects of the heart condition, they say.
According to KCH director Jonathan Ngoma, the condition is rare.
“It can be frightening to learn that your child has an inborn heart defect, but they are not caused by any external interference. So, neither the parents nor their respective families are to blame,” the medical doctor explains.
According to the World Health Organisation (WHO), almost one in every hundred newborns suffers a congenital heart defect globally.
But Ngoma says the Chilumphas and others in a similar situation need not despair.
“The good news is that that cardiac surgery and other relevant procedures are now performed on younger children, thanks to advances in medicine,”
The challenge for Malawi, however, is that the country is behind when it comes to harnessing medical knowledge and diagnostic technologies that provide detailed information about rare heart abnormalities.
Cassey’s referral confirms the glaring gap that needs closing.
The good news is that funds continue to trickle in from givers.
But the recent death of Faith should always remind government to invest in preventing unnecessary death due to neglected silent killers. n