18 February 2013

Nigeria: Parents of Hydrocephalus Children Complain of Neglect

A 37-year old mother of four, Vera Okafor, knows firsthand what dealing with a child with hydrocephalus means.

Pregnant with her first child at six months, she went for scanning and the result showed that there was nothing wrong with her baby.

But her hopes for a normal child was cut short when a week before delivery, she went for another scan and this time around, she was not prepared for the outcome of the result.

She sobbed, "this time, they discovered that my baby had an enlarged head"

The baby's enlarged head came from fluid-cerebrospinal fluid accumulating in her brain.

She disclosed that she delivered through caesarean section as doctors thought that there was no hope of survival back then.

Her baby was shunted her when she was just 13 days old.

She narrates, "the operation involved inserting a shunt to drain excess fluid, but the treatment doesn't cure the hydrocephalus and any damage to brain tissues remains.

"She doesn't like being carried. She just wants to be independent, but she can't move," says her mother.

"Even having access to doctors here at the National Hospital is not easy as they say. On your appointment when you come around, you wait and wait and sit. I did MRI test last two months (September). Up till date, the results have not been assessed. They have not said anything about her, though the doctor said the shunt has shifted. I don't know what to do."

"For a baby to be operated upon at 13 days, by now we should see tremendous improvement in her, but nothing."

Vera's daughter is confined to a little chair beside her mother as she cannot walk, sit, or talk.

The head of physiotherapy department, National Hospital, Abuja, Dr Oladunmi Ladapo, explained that the head size makes it difficult for children to control head movements.

He noted that they are sometimes fitted with cervical collars to hold their head. "The weight of the head pushes the collars down and sometimes, we have to reinforce them.

According to him, it is a transition signalling life continueslife with either a shunt or collar.

But Ifeanyi Okike's daughter, aged one year and 14 months, has not made that transition.

"We have not done the surgery but as for me, I am not comfortable doing it, because I can't watch my baby grow with a shunt inside her for the rest of her life,"

Okike who is a driver, said that his daughter's condition was not caught until she first had convulsions at two months, which according to him, is not normal, and the head started growing bigger and bigger."

According to him, he has never heard of the condition until now.

"She can't sit, can't hold her head for a long time, she can't stand. We are just managing. She's our first child, we can't throw her away," he wailed.

For Fatima Abubakar, it was a different ball game altogether.

She disclosed that when she gave birth to her son with hydrocephalus, many close relations and friends told her to pray so that the baby will die.

For her, it was an added burden as the husband and father, though a tailor is presently, out of job.

Though the son, Ahmed is still alive, eight months after his surgery, money to pay for other corrective surgeries is not available.

.But not all hydrocephalus children are even lucky enough to scale through the few months after birth.

Unlike Ahmed, Raphael, a father of ahydrocephalus child, did not have the priviledge of seeing his child live for more than two months.

He narrated, " I had no idea what the condition was like until my son was born. "First day I saw my baby, two, three minutes after delivery, I fainted. "We know about hydrocephalus because we have children with such problems, but what about others who don't know this?" "After staying in hospital for two months but because of certain problems he did not undergo surgery."

He advised that more information about the conditions will "save pastors and imams the stress of praying," recalling how when his baby was delivered, pastors "nearly demolished" his house with prayers."

The head of Nutrition department, Federal Ministry of Health, Uruakpan John, noted that the prevalence of neural tube defects is estimated at 7 in 1,000 deliveries and increasing in areas with higher maternal malnutrition.

Surveys have not been steady but up to 13,000 births with neural tube defects have been reported in Nigeria.

One study in 2004 found the condition in one in every 1,000 births, twice the incidence in the US. Later studies have found rates as high as 7 in 1,000.

The cause of the defect is not well known, but conditions as diabetes and obesity are thought to increase the risks of having a child with neural tube defects .

Both spina bifida and hydrocephalous conditions are neural tube defects which can occur in foetuses when their spinal column fails to develop properly, which usually happens in the first 28 days of pregnancy.

In spina bifida, varying degrees of damage-most of them permanent-can result in the spinal cord or nervous system. And nearly 70% of children with this develop hydrocephalus-an accumulation of fluid in the brain, causing the head to grow larger than normal.

John said there is evidence that folic acid can reduce risks when taken at start of pregnancy. "Not just folic acid, but folates and foods containing them."

According to health experts, a threshold for folic acid that can be put in such foods is pegged at 1.5mg/kg. Zinc content must not fall below 20mg/kg and vitamin A must stay above 30,000 IU(international units) or about 18mg.

The President of Spina Bifida and Hydrocephalous Care Foundation, Mrs Lawal Olubunmi, added that previous birth showing NTD and anything that causes high temperatures in a woman in early stages of pregnancy also increase risks.

She explained, "the chances of survival are moderately high with surgical intervention as soon as they are born"

"But delays leave room for infection before such children are taken to hospital-where they face more delays, because the infections have to be treated first."

On the management of hydrocephalus children, Dr Ladapo maintained that they are supposed to be managed by a team.

"We are supposed to discuss patients, not pass them along with referral notes. They are not files. We should not feel disturbed when we are called after four pm to discuss patients."

Okafor, whose daughter has lived with hydrocephalus for three years since her first surgery at 13 days old, wants government to help take her daughter to India for further treatment.

Neurosurgeons needed for surgeries are estimated to be just 36 in the country.

"If the federal government can assist, I will be eternally grateful, because I am not happy seeing her in this condition," she says.

"She cries a lot. She wakes up at midnight and cries till four am. It's not normal."

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