Spina Bifida: A silent killer
UNBEKNOWN to parents of many newborn babies, there are two connected diseases that can cause intolerable trauma and possible infant deaths.
Dubbed the silent killer, Spina Bifida and its associated ailment Hydrocephalus have become major contributors to infant mortality in Zimbabwe.
Spina Bifida (known as Musanadende in Shona) is a condition where a baby is born with a lump on the back, varying degrees of weaknesses in the legs as well as bowel and bladder dysfunctions.
Hydrocephalus, on the other hand, is a condition where the baby may not develop normally due to a fast-growing head with big veins.
Statistics worldwide show that one in every 2 500 children is born with Spina Bifida, while indications are that the prevalence of the condition is actually higher in Zimbabwe and other developing countries.
Ms Fortunate Khetani, who lives in Kuwadzana Phase 3 in Harare, explained how her bundle of joy, Theodora, contracted the dreaded Spina Bifida.
However, the baby was saved after she sought treatment early.
“My baby was born with the disease. I first discovered it when I went for an ultra-sound scan in December 2019. I was informed that the baby had an abnormality, as her head was abnormally big. They later noticed a lump on the baby’s back. My doctor diagnosed that my baby had Spina Bifida. It is a disease that I never knew about.”
Doctors continued monitoring her pregnancy until she gave birth.
“I successfully gave birth at our local clinic, even though the doctor had advised me to deliver at Sally Mugabe Central Hospital, where there was a paediatric specialist. After giving birth, I proceeded to Sally Mugabe Central Hospital where the baby spent one month under observation. There were many other mothers who had children affected by the same condition,” she added.
“What I learnt in hospital is that there are different cases, some develop the pimple on the back only, while others develop challenges on the head alone. The operation on Theodora was successfully carried out on December 6, 2020 at Sally Mugabe Central Hospital. We stayed in hospital until we were discharged on December 20, 2020.”
Theodora is now twoyears-old and in fairly good health.
Ms Khetani said her baby underwent the crucial operation with the assistance of the Spina Bifida and Hydrocephalus Association of Zimbabwe (SHAZ), an organisation that renders assistance to children who suffer from the ailment.
SHAZ has facilitated the operation of over 200 children to date and provided shunts that are used to drain excess fluids from babies’ heads.
Harare-based paediatric neurosurgeon Dr Luxwell Jokonya, who is the co-founder of SHAZ, said it is agonising to see infants dying on account of the twin conditions.
Dr Jokonya, who is also a lecturer in medical school, said the lump that develops on the back of a child that has Spina Bifida is caused by nerves that do not develop properly.
“This causes varying levels of disability, with mild to severe paralysis of the legs,” said Dr Jokonya.
He said the mortality rate for children aged five or under and are not operated on stands at 80 percent. Ordinarily, the operations should be conducted within the first three days of the baby’s life. “Spina Bifida normally leads to Hydrocephalus as an associated condition. Hydrocephalus is the abnormal accumulation of fluids in the brain, which can be caused by Spina Bifida as well as other conditions such as brain cancer, tumours and infection. The head will be growing faster than normal. Hydrocephalus is an emergency, which must be treated by an operation whereby you put a shunt to drain the fluids from the head.”
The major cause of Spina Bifida, he added, is folic acid deficiency in mothers.
“There are quite a number of factors causing Spina Bifida. If women take supplements for folic acid, they can reduce the prevalence. We also urge expecting mothers to take folic acid supplements as well as engage in physical exercise and have a healthy diet.”
SHAZ, which has been operating since September 2019, was also formed to complement the Government efforts and ensure that infants do not wait for a long period of time before being operated.
“Many babies were dying and at times we would keep them in the hospital for a long time. We also had pressure with the theatres; the number would swell in the wards. That is when we started surgical camps,” he said.
Dr Jokonya implored the corporate world to join hands with the organisation to save lives.
“It takes a village to raise a child,” he said. “There is a huge backlog of babies in need of surgery in the country. The longer we keep them waiting, the poorer the outcome, and we lose some along the way. The main thrust of SHAZ is to improve the quality of life for those affected through the provision of access to timely medical interventions as well as lifelong support because of their disability.
“There is hope that they will lead a near to normal life if proper healthcare is administered.”