The birth of Catherine Sandifolo’s forth-born child Alinafe on July 3 2014 was a trying moment. Her husband of 10 years walked away and society ridiculed her—all because the new born had a rare condition called hydrocephalus.
“The man lost interest in us the moment he saw the baby. He said he could not have a child with such a big head. That’s how he abandoned us, joining those who accused me of bewitching my baby girl,” she recalls.
Sandifolo remembers being bound to a sickbed at Kamuzu Central Hospital in Lilongwe for four months. “
“After being discharged, I had nowhere to go. I moved to my village in Thyolo, where I faced rejection too. My small vegetable business collapsed because there were no customers for me,” says the woman who has since shifted to Nchalo in Chikwawa.
Alinafe was diagnosed with an abnormal growth of her head before she was born. Then, her mother was seven-months pregnant.
However, the defect led to brain damage due to a buildup of fluids around her brains. This impaired Alinafe’s physical and intellectual development.
Four years on, Alinafe is still wearing nappies. She cannot walk. She cannot eat on her own. Her mother makes endless trips to the hospital.
“I am struggling. Sometimes, I miss hospital appointments due to lack of transport money. I engage in small scale businesses, but Alinafe’s condition slows progress,” she said.
Sandifolo’s case mirrors the plight of many women who suffer stigma and poverty after giving birth to children with Alinafe’s condition.
Men simply walk away, leaving them to handle it all alone.
Every year, the country registers about 350 new cases of hydrocephalus and spina bifida, a condition in which the backbone does not fully cover the spinal cord, leaving it exposed to various infections.
These people have difficulties walking and controlling urine or feaces-and often have to use a catheter for the rest of their lives.
Some persons who have grown up with the condition shared their experience during International Day of Hydrocephalus and Spina Bifida on October 15 at Queen Elizabeth Central Hospital (QECH), which sees 250 patients annually.
Some parents lockup children like Alinafe indoors for fear of stigma, while others have left them for dead.
Hearing such stories, neurosurgeon Dr Patrick Kamalo, who operates on children with such conditions, wept.
The doctor, himself a parent of a child with hydrocephalus, has many wishes.
He wishes hospitals had adequate equipment to treat the condition; all parents loved children with the rare condition just like any other child and society was free from stigma and discrimination.
He wishes his clients would enjoy a normal life.
But QECH, the country’s biggest referral hospital, does not have a CT scanner, a computerised X-ray which creates images of internal organs, bones and other tissues.
Without the diagnostic machine, Kamalo and his team cannot effectively treat children the likes of Alinafe.
“To operate on a hydrocephalus patient, we need a comprehensive scan on the head to see the extent of the problem, especially the amount of liquid in the brain and the level of brain damage,” he explains.
Currently, surgeons at QECH rely on magnetic resonance imaging (RMI) scan which is less effective and comprehensive.
“We have had situations where we discover a brain tumour while the operation is already underway. Some parents lose lives in the process. This is pathetic; we plead for an immediate intervention,” he says.
Hydrocephalus and Spina Bifida Association board chairperson for Blessings Chapweteka disputes the connection between the two conditions to witchcraft or curses.
The situation is curable if detected early, he says.
Some children develop hydrocephalus inside the womb. Meningitis and cerebral malaria attacks during infancy increases the risk.
According to Chapweteka, almost 80 percent of children with hydrocephalus are also found with spina bifida. “Women can avoid giving birth to children with such conditions by eating food rich in folic acid—[including leafy vegetables, oranges, beans and cereals]—particularly in the early days of their pregnancy when the baby’s backbone is still developing” he explains.