By Isaac Salima:
Just like any other pregnant woman Catherine Chimwaza, five years ago, was anxiously waiting for an additional child in their family. As curious as she was for a baby-girl, the nine-month period she had to wait to know if God had finally answered her prayer looked like a decade.
In 2014, heavens finally smiled at Chimwaza when she gave birth to a baby-girl who was named Alinafe. However what was supposed to be a successful motherhood for Chimwaza, took a bad turn when the baby started showing some signs of abnormality.
“I noticed that her head was growing bigger and that she could not do other things as a normal baby. Friends and relatives advised me to seek traditional medicines; a thing I did but to no avail,” Chimwaza recalled.
As a mother of other three children, each passing day threw Chimwaza into a troubled world of what could become of her only girl-child as Alinafe, at the age of three, could neither seat nor talk properly. It was at this point that she decided to seek professional medical help. A medical diagnosis revealed that Alinafe had a condition called hydrocephalus.
Now Chimwaza has to brace for her child’s bleak future as an enlarged head is not Alinafe’s biggest challenge. She cannot do other things like a normal child. At five years, she cannot make proper decisions and speak properly. As late reporting to the hospital might have greatly contributed to Alinafe’s present condition, 19-year old Vanessa Manda is swimming in glory when her mother’s swift response to the medics’ advice saved her life.
“I was surprised that my child could not speak or control bladder and bowel despite that she was close to three years. When I went to the hospital, I was told that she had Spina Bifida. Doctors advised me on what I needed to do to save the life of my daughter,” Vanessa’s mother said.
Vanessa is now a form two student at Destiny Private Secondary School in Chilomoni in Blantyre. Despite often loss of memory somehow haunting her, unlike Alinafe, Vanessa is able to attend school and her bright future is not in danger.
This is how the two conditions; hydrocephalus and spina bifida continue tearing apart innocent lives. Hydrocephalus is a condition that occurs when the normal drainage pathways of cerebrospinal fluid are blocked. This results in fluid accumulating in the ventricles inside the brain causing them to swell resulting in compression of surrounding tissue. The condition leads to victims having enlarged heads and experience brain damage.
Spina Bifida is a neural tube birth defect which occurs within the first four weeks of pregnancy. As a result the spinal cord fails to develop properly resulting in varying degrees of permanent degree of paralysis. In this condition a victim develops a swelling at the back.
Like Alinafe and Vanessa, people with these two conditions are common in our localities but little is known about hydrocephalus and spina bifida. It is for this reason that Association of Spina Bifida Hydrocephalus in Malawi was formed in 2007 with an aim of taking awareness messages about the two conditions to communities.
Every year the association holds commemorations for the day and this year the day was celebrated last week as parents of children with the two conditions and other people from all walks of life converged at Queen Elizabeth Central Hospital to join other countries in commemorate World Spina Bifida and Hydrocephalus Day under a theme: The Full Picture.
The association’s Country Coordinator Blessings Chapweteka spoke on the need for women to take food which is rich in folic acid at least three months before getting pregnant to prevent giving birth to children with the two conditions.
“About 60 percent of these conditions can be prevented if the women take food rich in folic acid before pregnancy. So if we look at the number of women who get pregnant is too big which is not easy to reach out to. The only way to do that is to fortify foods,” Chapweteka said.
He said that is why they take advantage of the commemorations to raise awareness on such messages since they cannot reach every corner of the country.
Renowned consumer activist John Kapito was the guest of honour at the event and promised to increase national awareness on the need to take fortified foods. Kapito also said that he will ensure that companies adhere to required standards in as far as fortifying foods is concerned.
Paediatric Surgeon at Queen Elizabeth Central Hospital Emma Thomson said the hospital records about 150 cases of the two conditions every year.
“But the figures are not a reflection of the situation on the ground because not all cases go to the hospital. We think this is just the start as there are more cases that go unreported. That is why there is need for awareness [messages about the two conditions] as with early surgeries many children can survive,” Thomson said.
According to online reports spina bifida is caused by a combination of genetic and environmental factors. Some factors, such as having a close family history of spina bifida or taking some anti-epileptic medication are known to increase the risk. However 95 percent of children with spina bifida are born in circumstances where high risk factors are not apparent.
The reports say more than 10 million people worldwide have spina bifida. In Australia approximately one in 1,200 pregnancies are affected by spina bifida. With the use of folic acid this incidence is believed to be declining. There are over 1,000 adults and children with spina bifida and hydrocephalus in Queensland.
Approximately 90 percent of people born with spina bifida also have hydrocephalus. As many sad tales about children born with the two birth defects continue being told, it was a different case during the commemorations when one young lady Hope Mkandawire, a hydrocephalus victim defied the perceived doom when she scored 14 points in this year’s Malawi School Certificate of Examinations.
“Not all is lost for these children. If they are properly taken care of coupled with seeking professional medical care they can become productive citizens of the country. Hope has just demonstrated that these people can perform wonders,” Chapweteka said.