Hydrocephalus: A mother’s worst nightmare
By Stella Barozi
It’s every expectant mother’s dream to have a healthy normal child when the time comes. We pray for the best during pregnancy since given our technology, it’s not easy to tell whether a child has problems while it’s still in the womb. We do whatever it takes to protect our unborn children, like giving up alcohol, following the doctor’s advice to the book and even calling the doctor before taking any medication during illness to make sure we are doing the right thing. Despite all the precautions we take, some children are born with deformities. And such is life.
When Columba Pius Mbiki was about a month or so in her fourth pregnancy in 2007, she started experiencing sharp pains in the right hand side of her lower abdomen. Her belly was also unusually big.
When she went to hospital, an ultra sound scan showed she had a tumor and she was put on bed rest.
“One night as I slept, I had a dream where a woman in a white gown showed me some wild fruits to take to remove the tumor. The fruits resembled cucumbers,” says Columba who lives in Morogoro Municipality
She ignored the dream but when it appeared for the third time, Columba sent one of her relatives to the bush to get her the fruits. “I ate them and vomited a lot such that my relatives thought I was going to have a miscarriage. Fortunately I did not and my big stomach shrunk tremendously,” says Columba.
When she went back to hospital for her antenatal visit, doctors were surprised to first see her reduced belly. Secondly, the scan showed very little signs of a tumor. “I initially did not tell the doctor what had happened but when he insisted to know, I told him about the dream and the wild fruits. He asked me to see him another day but I never did,” says Columba.
On 22nd June 2008, Columba gave birth to a bouncing baby girl. Her daughter, Josephine was born naturally despite the plan having been to deliver her through a caesarean section because of the tumor.
According to Columba, Josephine who is now four years old did not show any sign of abnormality until when she was four months old.
“One day when I returned from work, I noticed Josephine’s head had swollen a little bit and her face was very shiny.” The movement on the baby’s soft spot on the head also known as the fontanelle had stopped.
Josephine’s head got bigger by the day and Columba decided to seek medical advice. She took Josephine to hospital and the doctor said she had hydrocephalus.
According to internet sources, hydrocephalus also known as "water in the brain," is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain.
This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death.
Hydrocephalus can usually be treated using a piece of equipment known as a shunt. This is a thin tube that's surgically implanted in the brain and used to drain away the excess fluid.
Columba was referred to the Muhimbili Orthopaedic Institute (MOI) where her daughter was operated on on 21st, October 2008. A shunt was implanted in her brain to drain away the excessive fluid from her head and she is expected to live with the shaft throughout her life. The operation went very well and Josephine would be taken back to hospital for check-up. The check-up visits started with weekly intervals which later turned to monthly intervals, three-month intervals and now are done after every six months. Doctors are usually amazed at Josephine’s progress at every visit. During such check-ups, tests are regularly done to check the children’s developmental and intellectual, neurological or physical problems.
“Last year when the doctors were satisfied with Josephine’s progress, they advised me to establish an NGO or support group in Morogoro for parents with children with hydrocephalus,” says Columba.
They wanted such parents to learn from her experience and the fact that with early treatment, their children could be saved from further damage or even be healed like her daughter who lives a normal life today.
The mother of four tells you with pride how doctors have advised her to get her child a good school since she is doing very well intellectually.
When she got back to Morogoro, Columba did as the doctors’ had advised and started looking out for parents with children with hydrocephalus. MOI also used to send parents from Morogoro to Columba for psycho-social support.
On 23rd April, the Morogoro branch for the Association for Spinal Bifida and Hydrocephalus Tanzania (ASBAHT) was officially opened with Columba as the chairperson.
By June 30th, Columba had managed to convince parents of 24 children with the problem to join the support group. Of these, five have died from various diseases and only nine children are yet to undergo any operation although they have been attended to by doctors at MOI already.
MOI provides free treatment to such children but most parents have been unable to fully utilize the opportunity due to lack of awareness and sometimes poverty. Some parents, according to Columba are too poor to even afford the 6000/- bus fare from Morogoro to Dar es Salaam
“Most parents, especially women who bear the child care burden have no income at all. This is a very big challenge. Most hide their sick children because they think they can’t afford the treatment costs. What they don’t know is that MOI provides treatment free of charge, the operation, the tests,” says Columba.
Because of poverty and the stress of taking care of such children, Columba says most parents don’t see the importance of being in support groups. One advantage of being a member of a parents’ support group is that it helps parents to realize the importance of taking their children to hospital. Some hide them because they are not aware that the disorder is manageable.
Parents also share ideas and exchanging notes on how best we take care of their children, console and support each other in any way possible.
“Having such a child can be a nightmare. I know of parents who have abandoned their children because they have the deformity. Husbands have abandoned their wives because they gave birth to such children, leaving them to carry the burden of care all alone. You can imagine taking care of such a child as a single unemployed mother,” Columba notes.
She is herself grateful that her husband and family were very supportive. Columba says her husband’s support, family, colleagues at work and the community at large saw her through the difficult period.
“They gave me moral and material support throughout. It is this support that has made my daughter who she is today. Support helps in the healing process. It gives you the strength to fight on. Discriminating such a child only makes matters worse for both the child and its mother,” says Columba whose daughter looks just like any other child.
She calls upon society to view such children as other normal children who need lots of love and care. “Let’s carry this burden together,” she says.
According to Columba, the ministry of health has pledged to establish a centre with hydrocephalus experts in Morogoro if it is assured there are enough children with the problem. And this will only be possible if parents with such children come out. She believes there are more children out there with the problem. A centre in Morogoro will be a relief to parents to whom paying bus fare to Dar es Salaam
Columba calls upon government and other stakeholders to help bring services to their area as soon as possible. She advises parents to consult doctors every time they think something is wrong with their children. She says some parents consult witchdoctors first and only go to hospital when it’s too late. It is because she consulted medical personnel immediately she noticed something was wrong with her daughter that today Josephine lives a normal life. “The earlier the better,” Columba says.
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