MHCT fights Hydrocephalus

The joys of expectant parents are shuttered upon hearing these words, "Your child has a bigger head than any normal child and you have to go through a caesarian section to give birth." What! a big head? What could have caused the head to grow big, is it a normal child then, is it natural or spiritual, is it…? Are the unanswered questions, which go through the minds of heavily pregnant women.

Hydrocephalus, not a very popular disease but seems to be wreaking havoc in marriages, leaving women emotionally tattered and some children abandoned at various institutions at early life stages. The community itself labels the mother a witch, prostitute amongst other discriminatory hateful words.

Hydrocephalus as defined by medical scientists is an abnormal build-up of fluid in the ventricles (cavities) deep within the brain. This excess fluid causes the ventricles to widen, putting pressure on the brain's tissues in both children and adults. This disease does not seem to care about the little innocent, tiny wriggling babies and often seen with a very big extended heads. The disease is quiet scary when you hear about it for the first time, but when you visit the Harare Hospital and Parirenyatwa Hospital neurosurgeon department it seems the disease is a norm.

 Different shapes and sizes of the children's heads suckling from their observant mothers' breasts is the order of the day. The caregivers, mostly mothers of the babies have been emotionally scared, but why God, they question, some left by their husbands and some shunned away by the community and their families. What's only left for them is to strengthen each other and pray for the good health of their children.
 
Can it be treated? Will the head grow smaller? Will they walk, talk, grow and so on, are the questions lingering in the minds of the caregiver. Yes, the doctors can control the excess fluid by inserting a shunt, which drains it to the stomach and passed out normally. In 2017, Wadzanai Mhindirira had her beautiful princess Matifadza with hydrocephalus and a rare condition called Dandy Walker Malformation. Having told the terrifying news at 33 weeks, delivered via c-section and referred to Parirenyatwa for further assistance. She had all smiles that all was going to be well in the hands of the specialist and that the government of Zimbabwe was to cover for the operation cost for children less than five years. In order for the doctors to access the condition and damage to the brain, they requested for a CT scan, which costs about $300.00 USD.

This was a deterring figure as she was unemployed at that time. As if it was not enough, she had to folk out $170 USD for the shunt, which is used during the operation. It took her husband and family about a month to raise the amount for the requirements for the op. Due to the nature of Matifadza's condition, she had to go for an emergency operation otherwise she was to join the waiting list for five months of which Matifadza did not last five months after the op.

Having gone through all the pains, efforts of making Matifadza have a comfortable life and having given an opportunity to chat, live and dine with other mothers in the same condition, Wadzanai had a driving push to start a trust in remembering Matifadza as well assisting both the child and the caregiver.

Matifadza Hydrocephalus Care Trust (MHCT) offers medical (shunts, wheelchairs, diapers and accessories and financial assistance) and educational trust for the children and adults living with hydrocephalus. The trust also offers counselling to the caregivers and their families and as well as social services and education on how to take care of the children. MHCT has also support groups for the mothers in which they share their stories and encourage each other. As the organisation continues to grow, we expect to have the youths and adults support groups where they interact and have various educative and entertaining activities.

It is also the desire of the trust to open a rehabilitation centre, as most children's homes do not have facilities to offer our children, as they need extra special care. The trust also offers mothers (caregivers) empowerment projects so that they have a sustainable livelihood. The trust has also outlined awareness and outreach programs for 2022 in all provinces in order to educate the whole nation about the disease, how it is treated and benefits of early detection. MHCT hopes for the full inclusion of the disabled in the socio-economic activities and definitely next year will participate in the National Disability Expo.

Matifadza Hydrocephalus Care Trust welcomes all partners who wish to collaborate and contribute towards this philanthropic work of improving and promoting rights of the hydrocephalus community.