Health service providers have asked for male involvement in the
care of children with Spina Bifida and hydrocephalus.
Samalie Matovu, the Executive Director Katalemwa Cheshire Home, a
rehabilitation center says that 80 percent of their clients who bring children
for care are women.
Matovu says that they receive between eighty and a hundred
children every month whereby about twelve are new patients. Apart from
providing clinical care, they have embarked on having counselling sessions for
parents after receiving reports of fathers absconding responsibility.
According to Matovu, their new approach hasn’t yielded as much,
since only about 10 percent of men provide care when they bear a child with the
birth defect of the spine which often comes with enlarged heads, paralysis of
the lower limbs, club foot and incontinence among other complications.
Matovu says because women are mostly involved in the care, they end up failing
to provide appropriate care for the children because of the heavy financial
burden involved. For instance, many mothers still can’t afford assistive
devices that have been made cheaply using locally available materials.
She says the cheapest device goes for 600,000 Shillings and many times it’s not
all that the child needs.
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Ruth Nalujja, who heads the National Association for Children who
suffer from Spina Bifida and Hydrocephalus said in line with the theme of the
World Spina Bifida Day marked every October 25, they are calling for more
partnerships not just at the family level.
While the disease is preventable with simple nutritional practices
by pregnant women and those hoping to get pregnant, Ministry of Health figures
show about 6,000 babies are born with the birth defect every year.
These children that may require multiple surgeries and specialist care are only
currently treated at three hospitals including Mbarara hospital, Mulago
National Referral Hospital and Cure Hospital in Mbale.
Nalujja says this has been prohibitive for many parents even as
some offer free surgeries or subsidized care. She noted that there are
only a few neurosurgeons in the country that can handle the condition.
Mwine Rwari, a father of two children with Spina Bifida and hydrocephalus from
Mbarara reveals spending millions of money in just travel to have his son
undergo surgeries. The teacher by profession says he was forced to resign
to attend to the son who has so far undergone eighteen surgeries. The six he
says were done in Mbale and he has lost count of the amount of money he has
injected into the care.
Dr Rosemary Byanyima, the Deputy Executive Director Mulago National
Referral Hospital says that they can’t attach a cost to care and yet it’s not
to cure but just to improve quality of life.
She urges men other than abandoning responsibility to start learning how to
offer basic care such as massages from home.
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Byanyima says that mothers should enrol for nutritional
supplements such as folic acid as soon as they get pregnant in addition to
advancing awareness such that the men can understand in case they have a child
with such complications.
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