CURE gives hope to babies

Child rights organizations in partnership with Vision Group are honoring and recognizing individuals, organizations and businesses working to improve the lives of children in Uganda with Tumaini Awards

By Andrew Masinde
A large signpost stands proud at the main road with the inscription ‘CURE Children’s Hospital’. This marks the spot for a curing ground for the lives of children with disabilities.

The hospital handles children between one-day-old to six-year-old although they are planning to start an all-inclusive adult programme.

A man at the gate welcomes visitors and asks them to sign in the register. A woman is rushing through the gates wailing. Her baby has a swollen head; a fatal condition I later learn is called hydrocephalus.

The man at the gate also tells me the sick baby is just two weeks old and was born with a tumour in the head.

“My brother, if you are not a strong man, you cannot work here because you will be affected psychologically. When you see the women who come in with their children you may reconsider having a family. The women come crying but when they leave, they are all smiles,” says Ronald Musamali, the watchman, as he leads me to the reception.

Mothers wait for the children they brought to the hospital as doctors do whatever is in their power to save lives. The doctors at this hospital work on the children with lots of love and care. At first glance one would wish all hospitals operated this way, but on a probe, one learns that this is a meticulously crafted mode unique to only this facility.

“Our doctors are taught to work under God’s love, the people they treat are looked at as a blessing,” says Collins Rugambwa, the CURE-kid coordinator.

CURE Children’s Hospital of Uganda is a specialised children’s private neurosurgery hospital, owned and operated by CURE International.

It is also involved in teaching paediatric neurosurgery for Sub- Saharan Africa and is located in Mbale, about 250km northeast of Kampala. It charges a below-the-market price for it services.

As a non-profit organisation, CURE is delivering life-changing surgery and the good news of God’s love.

Opened in 2000, the hospital has six doctors, 33 nurses and serves in excess of 7,000 patients annually, performing almost 1,000 operations. It not only provides life changing surgeries, but also offers comfort and support to families of children with the disabilities they deal in.

The 42-bed in-patient facility also offers a full diagnostic centre with CT scanners and is equipped with operating theatres and an intensive care unit.

Activities

Since March 2010, CURE has treated more than 10,000 patients and provided 2,300 life-saving surgeries. With donor support, the hospital is able to carry out surgeries for neurosurgical conditions like hydrocephalus, encephalocele, cleft, palate, spina bifida, brain tumours, congenital anomalies of the brain, skull, spine and spasticity.

Other conditions handled at the hospital are epilepsy surgeries, private services to the public for trauma treatment, laboratory services, CT scans and other diagnostic tests.

Derek Johnson, the executive director at CURE Uganda, says the hospital has a long-term goal, which involves following-up their patients and taking them to school.

He adds that the policy requires a broader understanding and acceptance beyond families and communities, through to the national level.

In 2011, CURE spent over sh2b in running the facility, half of this was from overseas donations through CURE International, 30% from sources within Uganda, 8% from the International Federation for Spina Bifida and Hydrocephalus, 3% from Liliane Fonds and 9% from other sources. 78% of their expenses are direct programme costs, the other 22% goes to indirect and administrative costs.

The hospital operates a busy outpatient clinic and owns a van that transports patients to and from remote areas.

“CURE is a life saviour, my child would have died. My mother-in-law told me the baby had been bewitched and that I should go to a witchdoctor. I refused to do that and just about that time a friend told me about this hospital and I have no regrets,” Mariam Luiga, a parent, says.

Luiga adds that she also went to the facility with reservations because it was far from her village and she did not know where her meals would come from. Luckily for her, she found all the food she needed at the hospital.
“They provide very good meals, all one has to come with are the clothes to wear,” she says.

“Doctors at national hospitals had failed to treat my baby’s disease, but when I was directed to this hospital, I was told he had hydrocephalus. My son is now improving ,” says Grace Iyokia who had spent two weeks at the hospital.

CURE offers training programmes in paediatric neurosurgery in collaboration with Advanced Training in Hydrocephalus (iPATH); it also trains resident doctors in Endoscopic Third Ventriculostomy (ETV), a procedure for the treatment of hydrocephalus, a condition characterised by the accumulation of fluid around the brain.

It has also offered training and equipment to establish three new “ETV Centres” each year by undergoing a three-month training and upon completion, established a centre for the surgical treatment of hydrocephalus in their own country. So far Ghana, Zambia, Afghanistan, Rwanda, Nepal, Senegal, Honduras and Madagascar have expressed interest in the programme.

Challenges
Like many other nonprofit organisations, CURE’s main challenge is the lack of human resources to carry out work in a short time. The hospital lacks a paediatric neurosurgeon and post-operative care requires niche skill sets. The demands for the training are more than CURE and the prospective trainee can afford.
According to Rugambwa, one of the primary determinants in successful long-term outcomes for children with neurological disabilities is robust patient follow-up and consistent therapy and care. He adds that during the first five years of operation, the hospital treated more than 4,000 children. However, compliance rates for follow-up are low, primarily due to the costs for travel to the hospital and back.

CURE’s success
“CURE has brought follow-up clinics closer to the communities they serve in an attempt to eliminate the issue of transport costs using new telecommunication technologies and mobile clinics,” says Rugambwa.

Currently, they see more than 2,500 children for follow-ups, through four regional clinics in Mbarara, Gulu, Lira and Kampala and have managed to increase the catchment area to include all Ugandan children.

With the increase of the number of districts, they have had to balance the cultural and language challenges by trying to be as balanced as possible in staffing. So they got representatives from every tribal group on their staff, which has helped in ensuring that patients and families receive proper explanations, are informed for consents and understand the conditions and treatments they receive.

Do you know any individual, company or organization that is working to improve the lives of children with disabilities in Uganda? Nominate them for the Tumaini Award. Write to The Features Editor, P. O. Box 9815, Kampala, Uganda or download and fill in the nomination from www.tumainiawards.com.

You can also send an e-mail to awards@tumainiawards.com. To nominate by SMS: Type TUMAINI leave space NOMINEE NAME & PHONE CONTACT and send to 8338. --