Three-year-old Floyce Oyier still struggles to stand on her feet. She crawls about to get to toys beyond her reach. Her mother, constantly watching over the little girl, will sometimes scoop her up and transport the squirming toddler to wherever she wants to go. Other times, much to her mother’s delight, the little girl hoists herself up on her feet and stands upright while clutching the sofa.
“That was a feat I didn’t expect to happen. I choose to remain hopeful,” says Davin Oyundi, Floyce’s mother, tears of gratitude standing in her eyes.
At just two-weeks-old, Floyce underwent surgery to correct a spinal defect she was born with. Her spine was not fully developed at birth. The condition is known as Spina Bifida, and though rare in the general population, it is the most common neural tube defect in the world.
“It is a birth neural tube defect due to incomplete closing of the spine and the membranes around the spinal cord during early pregnancy,” says Dr Dedan Ongonga, a paediatric surgeon at Jaramogi Oginga Odinga Teaching and Referral Hospital.
When Davina went into labour, it was in the middle of the night and living far away from health facilities, she turned to a traditional birth attendant to help her deliver her third-born child, Floyce.
On taking the baby to the hospital for a health check the next day, the doctors noticed a swelling at the bottom of her back; a tuft which medics described as protruding spinal cord tissue.
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“I was nervous and worried. The birth attendant had earlier told me that the baby had a serious problem that needed urgent medical care,” Davina recalls.
The medic would refer her to Kijabe Hospital for a correctional surgery as the clump was leaking some fluid.
“The defect is commonly found in the lower part of the back, but it can occur anywhere from the head going down. The tissue that should enclose and protect the spinal column does not form properly, leaving part of the spine uncovered, with nerves exposed,” explains Dr Ongonga.
How common is this defect?
“At the hospital, in a month, we attend to an average of two children born with the condition. A majority of such surgeries are carried out at Kijabe Hospital.”
Apart from the swelling on the back, patients also develop stool and urine incontinence. This means that they can’t control their bowel movement and bladder function. The latter also leads to urine retention.
In addition to the weakness of the limps, the patient can end up paralysed.
“Spina bifida commonly coexists with hydrocephaly. In fact, the percentage of those that have spina bifida without hydrocephalus is very low.”
“When one presents with spina bifida, we first have to rule out hydrocephalus. If a child has hydrocephalus and spina bifida, we cannot repair the spina bifida before we sort out the hydrocephalus,” says Dr Ongonga.
Hydrocephalus is when there is a buildup of fluid in the cavities deep within the brain, which then puts pressure on the brain. This can lead to brain damage.
If at the initial period there is no hydrocephalus, the spine is repaired and close follow-ups are made to see any possible development of hydrocephaly.
The condition is caused when pregnant mothers are deficient of folic acid- a substance used in the production of blood. A folic acid deficit can lead to a mother giving birth to a child with spina bifida. In fact, some of the supplements given to pregnant mothers contain folic acid. That said, that isn’t the only cause. Some of the causes of a number of spina bifida cases have never been identified.
Most affected pregnancies are uneventful, a mother might have the baby and deliver without an inkling of the problem. But if the mother was attending antenatal clinics, obstetric ultrasound can detect spina bifida since the swelling at the back can be visible. If it’s picked up early, then repair surgery can be carried out immediately the baby is born.
“Surgery helps close the defect. Sometimes we will give the children about a year or six months before the surgery is carried out, but if the membrane is ruptured and there is a fluid leak, the surgery is carried out immediately. This is because leaking can cause wound infection which can cause a baby’s death,” explains Dr Ongonga.
There are membranes that are used to repair the problem. And post-surgery, mothers are advised to apply surgical spirit on the membrane.
“This is to harden it,” he explains.
Interestingly, Davin states that she attended the clinic and did ultrasounds, but medics assured her that the baby was alright and there was nothing to worry about.
“The swelling was so big after she was born, so it disturbs me that no one saw anything during the checkups,” says Davin.
“There are some concealed forms of spina bifida, but if unconcealed, an ultrasound should detect the swelling,” asserts Dr Ongonga. “Even when detected, very little can be done then except wait for the child to be born in order to carry out a correctional surgery.”
Management of spina bifida is lifelong and it depends on the severity of the neurological deficits a patient has before the surgery. This is because some damages to the nerves can be irreversible.
The surgery is free in public hospitals and costs up to Sh200,000 in private facilities.
“I have noted that many patients come from low-income earning families due to deficient folic acids in their diet. After surgery, patients must undergo physiotherapy and occupational therapy to help strengthen the muscles. Sometimes, patients develop clubfoot and need orthopaedic attention,” explains Dr Ongonga.
Today, baby Floyce undergoes physiotherapy sessions which have contributed to an improvement in movement. Davin hopes that she will soon see her baby take her first steps and lead a normal life.