Thirteen month old Christian Odoch was the first patient I encountered with spinal bifida. He was brought to Vision Group premises by Ayo Pamela who says she was abandoned by her husband as soon as she gave birth to the boy. He has a large swelling on his lower back in a shape of a head. This swelling grows bigger as he grows. Ayo needed the media to help her campaign and raise shs.60m for her son’s operation in Nakasero hospital.
The local musician in her mid-thirties says her music- which is her main source of income- has been on a stand still since Christian was born, ultimately shrinking her income.
Palma, as she prefers to be called, (says she) gave birth to Odoch in Kotch-Goma in Gulu hospital. However, the toddler had such worrying complications that they he was referred to Mbale regional referral hospital. There was no solace and she was further referred then to Mulago National Referral Hospital. At Mulago, the equipment to efficiently carry out the operation was missing. She says she was then referred to Nakasero Hospital.
I took it up, and decided to look into the facts of the matter. One of the doctors who tended to her at Nakasero hospital spoke to me on grounds of anonymity. He contradicted many things like Palma is not the mother of the child. He also said the father of the child, a UPDF had not abandoned them financially as she claims. “In fact, he called recently to find out how far we had progressed,” the doctor said.
After an interrogation over phone with Palma, I resolved that relations did not matter here. Rather, Odoch represents many sick babies that I did not know about yet. I decided to find out more about the illness and how much it has affected Uganda.
I then met Dr. Michael Muhumuza, head of Neurosurgery Mulago hospital. If Odoch is lucky to be operated on, Dr. Muhumuza’s hands will do the healing craft.
So what is spinal bifida?
Spinal bifida is a neural tube defect. Dr. Muhumuza says, “Spinal bifida results from having low folic acid levels at conception.” Much as the disease can be detected within six weeks of pregnancy, “not much can be done to revert a fetus that already has neural tube defects.”
The disease manifests as a swelling on a baby’s back, halting proper development of a baby’s spinal cord. It defect weakens children’s lower limbs leaving them ridden in wheelchairs all their lives. It also permanently weakens the child’s ability to control the flow of urine and feaces; medically known as incontinence.
Odoch has a small opening on his anus where he is able to defecate from. That is the case with all patients of spinal bifida. Palma says he can take even two weeks without passing stool.
As you can see, the child becomes “a burden the mother, the family and to the nation at large. The expense of taking care of them is high. This would rather be avoided.”
Just a dose of folic acids
Over the years, this condition has become very common upcountry. Ironically, it is a rare condition in countries like China and Europe where green-leaf vegetables are grown on a smaller scale compared to developing countries like Uganda.
All sexually active women are prone to the defect. Medics advise that a good dose of folic acids in the body three months to the conception is the only simple prevention to the otherwise costly defect. Thus it is important for couples to plan for pregnancies.
“That is why it is good to sit down as a couple and plan when to have a baby,” says Dr. Muhumuza.
The ward at Mulago National referral hospital is small. Once an operation is carried out, patients are discharged. Surgery only helps to close up the swelling but cannot cure the disease. Dr. Muhumuza calls on expectant mothers to visit antenatal clinics as frequent as possible. This is because the earlier the defects are detected the better.
At Mulago hospital, the surgeries are carried out free of charge.