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Couple stranded after birthing baby with rare brain deformity
Gulu Regional Referral Hospital where the baby is currently admitted in the Neonatal unit for Intensive Care management. PHOTO | COURTESY
A couple in Pece Vanguard, Laroo-Pece Division in Gulu City is stranded after giving birth to a child with a brain outside from Aywee Health Centre III.
Moris Ogenrwot, 27, walked his wife Ms Sharon Lakaraber, 24, into Laroo Health Centre III last week (on Thursday) to deliver their fourth child. However, they were ‘shocked’ to learn that their child had an encephalocele complication.
Medical workers at the facility quickly referred the couple and the baby to the Gulu Regional Referral Hospital Neonatal unit for intensive care management.
Encephalocele is a sac-like protrusion or projection of the brain and the membranes that cover it through an opening in the skull.
The condition is a neural tube defect that affects the brain. It occurs when the neural tube does not close completely during pregnancy. The result is an opening anywhere along the centre of the skull from the nose to the back of the neck but most often at the back of the head.
Ms Lakeraber says the condition of her newborn child has since left her traumatized.
“I struggled to pay all the antenatal visits amidst all the lockdown restrictions and in the end I my baby with this condition. It is difficult for me,” she said.
Besides having encephalocele, her baby also has a defect on the mouth with lips stuck to each other and sealed.
“She cannot cry or suckle breast milk. My parents and relatives are saying I should go back home with the child because there is no money to waste and the condition looks evil,” she added.
Whereas she made all the required antenatal visits from the moment she conceived, her husband Mr Ogenrwot said they never did a single scan throughout the nine months.
“She went 8 times and I accompanied her twice but she never did a scan. Perhaps that is how we failed to realize the child was developing with such issues,” he said.
“We are stranded since we were never financially prepared for such,” he added.
High survival chances
Ms Christine Akumu, a nursing assistant at Gulu Regional Referral Hospital Neonatal Intensive Care Unit said that they had examined the baby and that her chances of survival were quite high.
“But that requires much-specialised treatment which the hospital is trying to ensure that this deformity is worked on,” she said.
Senior paediatrician at the same facility, Dr Florence Oyella Otim said the defect occurs in a woman’s pregnancy when part of the baby’s skull does not close all the way.
She attributed the condition to failure of mothers to tablets that help in the development of babies while in the womb.
“She might have not been taking folic acid or she might have started late. A pregnant woman needs to begin taking folic acid before conceiving,” she said.
“The hospital is referring this complex condition to Cure Children’s Centre hospital in Mbale District where there are specialists in handling such conditions. We are working with AVSI Uganda who is organising everything to ensure that the child is taken to the hospital in Mbale for better medical care,” she added.
Meanwhile, Dr Hussein Ssenyonjo, a consultant neurosurgeon at Mulago National Referral Hospital said such babies are first subjected to a brain CT scan before a surgical procedure is planned.
“It is in a rare scenario that a few die. Some specialists can handle such complications, unfortunately most of them are not situated in the upcountry areas,” he said.
