Folic acid could lower risk of birth defects

Dr Michael Ogwal, a general practitioner at Cure Children’s Hospital in Mbale, says out of 1,000 children born in a hospital every year, at least three to five have spina bifida and hydrocephalus. 

Spina bifida is a condition where the foetus’ spinal cord fails to close during development. Dr Ogwal says this happens between 20 and 28 days of gestation, often before a woman knows she is pregnant. Since the spinal cord does not close, many of the nerves are exposed, resulting in damage to the cord as the pregnancy develops.
“The child is subsequently born with a sac, which contains contents of the spinal cord that have pushed through the backbone,” Ogwal says.

Hydrocephalus 
Hydrocephalus on the other hand means there is too much water inside the brain. Although water is essential for delivering nutrients to the brain and removing toxins, in cases of hydrocephalus, the water accumulates in excessive amounts, impacting the nervous system, bones muscles, kidneys and the bladder.

“Some children are born with it while others get it after birth. If not caused by spina bifida, it can happen as an infection in the brain, usually during the first three months of life,” Dr Ogwal says.
A brain tumour can also cause hydrocephalus by blocking the passage of water from the brain to the rest of the body. 

Stigma
In 1996, Benjamin Kawuma, a baker, was born with hydrocephalus and underwent his first surgery at Mulago National Referral Hospital, with consequent surgeries taking place at Cure Children’s Hospital. 
In 2006, the Primary Five pupil was taken to Katalemwa Cheshire Home for physiotherapy. Kawuma says for the first time, this felt like home because there were many other children like him there. However, out of this home, he continued facing stigma because of the way he walked, ate and his appearance.

“At school, pupils refused to sit or even play with me because I had a big head. Many people thought I had been sacrificed for riches, and thus always kept a safe distance from me,” Kawuma says.
This, however, did not deter him from dreaming big, and support from his parents was a bonus.
“Whenever I set my mind to doing something, I had to see it through. As I grew up, I purposed that one day, I would stand before crowds to sensitise them on spina bifida and hydrocephalus, their causes and why children born with these conditions can live normal lives,” he says.

Education
Since he could not walk properly, Kawuma says he faced trouble accessing some of his classes.
“I could not climb stairs and since this was the only way to access some classes, it became hard for me to attend them,” he says. Also, because he was always forgetful, which affected his grades, he only managed to obtain his Senior Four certificate. He was then advised to instead enrol for a vocational course. 

“I registered at Bake For life College in Tororo for a two-year certificate in baking and since I wanted more out of life, I upgraded to a diploma in accounting and finance,” he says, adding that he also worked as a volunteer at Katalemwa Cheshire Home, where he used to receive therapy.

Both conditions 
Ruth Nalugya, a social scientist and executive director of Spina Bifida and Hydrocephalus Association of Uganda (SHAU) is a mother to a seven-year-old child with both spina bifida and hydrocephalus.
“During a CT scan when I was seven months pregnant, the radiologist rudely said: “prepare to have bino ebyaana ebyemitwe eminene, which literally means, prepare to have a child with a big head,” Nalugya recalls.

However, although she had had several scans, it was never discovered that her child also had spina bifida.
“My baby was born with almost no bottom. There was just a flat surface with a small hole,” Nalugya says, adding that she was glad an operation to close this hall was carried out on the day the baby was born.
Not prepared and with little information on how to take care of this delicate child, Ruth was sent home. “A week later, we had to go back for an operation to drain the water in the head,” she says. 

A shunt (hollow tube surgically placed in the brain (or occasionally in the spine) to help drain cerebrospinal fluid and redirect it to another location in the body where it can be reabsorbed) was inserted. However, this failed after one week. The subsequent two surgeries also failed and in total, she had four surgeries. 

Cost
Every surgery would cost at least Shs3m in addition to the costs of the different consultation and hospital fees. My daughter also had to take an antibiotic when the shunt got blocked to avoid more infections. The small bottle would cost Shs90,000 and she would take 1¼ bottles every day. 
A social scientist, it became hard to balance work and the baby and she had to quit her job. However with counselling and support from her family, she learnt to accept what was going on. 

“My husband’s support and power of love helped me boost my child’s self-esteem. I have taught her to be confident and everywhere we go, people show her love because she loves herself,” she says. She is now in a mainstream school in Primary Two and is able to catheterise herself at school and sterilise at home. 

A connection? 
According to Dr Ogwal, at least 80 per cent of babies with spina bifida also develop hydrocephalus. This condition can also cause convulsions, tunnel vision, mental disability or death. The child also gets irritable, their eyesight is affected as well as their growth and development.

Treatment
Treatment for both conditions is surgery, although it marks the beginning of a long journey of rehabilitation. Because the nerves are already damaged, the limbs and legs may not be as functional. Dr Ogwal says the earlier the surgery is done, the better the outcome.
There is also medicine given to reduce complications but does not treat them. “If our care system focused more on neonatal infections, it would reduce the prevalence and terminal effects of the conditions,” Dr Ogwal says.

Prevention
Dr Ogwal says the risk of neural tube defects such as spina bifida can be reduced by up to 70 per cent if the mother takes adequate amounts of folic acid every day before and after pregnancy. 
He adds that sources of folic acid include whole grains, fortified staple foods such as wheat and maize flour, dry beans, leafy vegetables and fruits or supplements containing folic acid.

Helping the child cope with stigma

According to Kenneth Nangai, a therapist at Katalemwa Cheshire Home in Gayaza, here are some of the ways that children with such disabilities can be helped.
Parents
Nangai believes a parent plays a central and crucial role in the rehabilitation of disabled children, let alone claiming access to facilities, services and budgets in the community.

But those parents have to be empowered. Issues related to poverty tend to be a huge barrier towards defeating these conditions since treatment and other related services such as surgery, therapy and rehabilitation are expensive.
To address these issues, Katalemwa provides the parents with entrepreneur skills such as tailoring and knitting, among others to help them raise money to support their families.
Forming parent support groups and SACCOs helps parents save and borrow money to start businesses. 

Children
Children are provided with assistive devices such as wheel chairs to help them improve their sitting and eating abilities.
Physiotherapy is also done to help the bones firm. According to Nangai, after knowing the limitations of children, if it is school related, they can go to the school and make changing rooms for them to go to when they need to change catheters or pampers.

Teachers
When the child is able to go to school, Nangai says, they visit the schools and sensitise the teachers on how to help the child. For example, sitting positions near the door makes it easy for the child to leave the classroom should they need to ease themselves.
We also encourage teachers to speak to other students and warn them against creating a hostile environment for disabled children, such as the use of nicknames.

Health centres
“We have also started going to health centres teaching them that a child with a rare complication such as spina bifida can also get the same treatments as the rest,” Nangai says. 
This, he believes, will discourage the tendency to send such children to specialised hospitals for treatment of say malaria, which can be done at any hospital.