WHEN you mention the word ‘House of Hope’ in Mwanza, majority of the residents and across the Lake Zone will automatically know that you are referring to a recovery home for children after surgery.
Located in Mwanza, the house also offers rehabilitation, school and sports programmes in order to keep children healthy and active, when they wait for the process of having surgeries at Bugando Medical Centre (BMC) and this gives majority of them, who come for medical services from distant rural places a safe place to recover close to their doctors and hospital.
Meeting Dr Hendry Tlawi from the Haydom Lutheran Hospital, who is a specialist in the surgeries, during the launch of Kitongo House of Hope in Magu District of Mwanza Region, recently, it was an emotional experience to learn the pain some of them undergo, especially in backbone formation during their embryology developments in their mothers’ wombs.
He noted that once a defect occurs, it ends with the pathology of the swelling-like shape that enlarges and comes out of the backbone-in medical term ‘Spina bifida.’
“Spina bifida can happen anywhere along the spine if the neural tube does not close all the way. When the neural tube doesn’t close all the way, the backbone that protects the spinal cord doesn’t form and close as it should. This often results in damage to the spinal cord and nerves or in simple terms causes neurological defects in the human body,” he pointed out.
Dr Tlawi further explained that the house was built by Child Help Tanzania Organisation to accommodate children mostly with Spina bifida and Hydrocephalus (swollen/ big heads) complications, adding: “Spina bifida may end with complication of partial or complete paralysis of the lower limbs due to compression or cut of the nerve fiber, depending on the severity of the problem.
“Also, the patient of spina bifida may have complication on bladder and bowel system.” On what is commonly known as ‘big heads’ the medic noted that hydrocephalus is defined as excess cerebrospinal fluid (CSF) accumulation in the head caused by a disturbance of formation, flow, or absorption of cerebral spinal fluid.
He added: “Hydrocephalus is caused by impaired circulation of the cerebral spinal fluid that is called obstructive hydrocephalus because CSF circulation is anatomically blocked.
“However, one can suffer from only spina bifida but not hydrocephalus or in some cases, both of them. In our medical team-the treatment of Hydrocephalus is inserting the Ventricular Peritoneal Shunt (VP Shunt) tube and for spina bifida is known as back closure.
For children with spina bifida usually their parents should be trained on Clean Intermittent Catheterization (CIC) management for bladder and kidney’s safety as well as preventing the Urinary Tract Infection (UTI) infections. The main issue is to empty/ drain urine, at least every three to four hours, as well with bowel management in order to empty the faeces.
“That’s why we call parents with children of spina bifida and hydrocephalus to the House of Hope for training purposes, which we call ‘CIC week’, ‘’ he said.
Another complication which may occur for those of spina bifida and hydrocephalus if the measures are not taken well is that the child may have ended with the pressure sore.
Here, wounds are also mostly likely to develop on some body parts of the victim, as results of paralysis and this should not scare the patient. Mostly, about 80 per cent, the problems are due to lack of folic acid vitamins in the mother’s body, especially in the primigravida (first pregnancy) women, where some deliver children with hydrocephalus or spina bifida or both.
“We recommend the parents/women with children of hydrocephalus and spina bifida should have family planning in order to have time for the child to grow, also to continue with supplementation of the folic acid,” advised Dr Tlawi. Again, nutrition should also be taken into consideration to let the mother have folic acid supplement.
On his part, Director for Child Help Tanzania, Mr Hakim Bayakub, called on stakeholders to support the Organisation’s efforts towards serving the victims. According to him, the number keeps on increasing, while the Kitongo house’s capacity is to serve only 20 children.
“We are in need of among others, more beds and mattresses, foodstuffs and health insurances. The House should be also expanded to accommodate as many victims as possible,” he said.
Adding: “Some victims may also suffer from malnutrition, hence, a need for extra medical attention as well as balanced diets.” Before the Kitongo House’s construction, the victims from outside Mwanza, who were supposed to have regular visits to Bugando for clinic services failed to make it as they had nowhere to stay and this forced some to opt to quit the services.
In efforts to serve all victims, the Organisation is set to have Houses of Hope in all regions, whose hospitals offer Spina bifida and hydrocephalus services, including Arusha, Kagera, Mbeya and Kilimanjaro.
The Houses are now available in Dar es Salaam, Mwanza and Zanzibar, the Director affirmed, adding that apart from the patient(s)’s accommodation, the Organisation has been offering some medicine material, including VP Shunt, ETV as well as Ultrasound machine to Bugando Hospital, so as to ease the services for the patients.
On his part, Director of Child Help International, Mr Pierre Mertens, advised the parents to stick to the expert’s pieces of advice, especially folic acid supplement consumption, three months before a woman conceives. He said that the problems are mostly serious in African countries, and called upon the public, especially stakeholders to intensify the fight.
“We have also been encouraging food fortification, as one of preventive measures,” he said.
Bugando Hospital Representative, Dr David Sikambale, urged the parents to avoid wrong beliefs over children with Spina bifida and hydrocephalus, saying the complications are managed in medical world.
“The complications are easily managed, especially when the victim receives timely treatments, he said. According to him, the problem’s scope is still big since Bugando Hospital records not less than 700 cases a year, in comparison to the number of specialists to address them.
One of the parents at Kitongo House of Hope, Ms Upendo Gesimba, admitted that wrong beliefs have been negatively impacting on the victims, with her son being one of them. Narrating, she confided that her husband and family members believed that having a child with Spina bifida and hydrocephalus complications is a misfortune, whose cure is dumping the kid to wait for death fast enough.
“I vehemently rejected the proposal and as a result, my husband abandoned me…, but I am thankful to the Organisation for the rescue,” she said.
Some parents at the House of Hope, including Ms Sophia Nkana, affirmed relief to their children who have been attending the clinics on a regular basis at the Bugando Hospital.
Before the accommodation, Ms Nkana’s eight-year old son, Mathias Mtao, who suffers from both Spina bifida and Hydrocephalus complications, was unable even to move, but he now makes it with a support of walking clutches after the medics attended to him.
According to her, Mtao could have fully recovered had he attended all the clinic sessions, but they missed some due to lack of transport support from their home village in Rukwa Region.
