A birth defect known as spina bifida has terrible consequences for children. A clinic in Tanzania assists them to live a better life, writes Dr. Theresa Harbauer who started the initiative.

Together, they race around the hospital grounds of Haydom Lutheran Hospital in their new wheelchairs. With a basketball on their laps, the wheelchair kids are on their way to a new basketball court, laughing and giggling. Nothing reminds onlookers of the fact that they have been struggling each day of their young life. All of them have spina bifida, a congenital birth defect of the spinal cord, that leaves them paralysed, unable to walk and incontinent. 

Here I want to tell the story of little Theresa, one of the wheelchair children of Haydom in northern Tanzania. As a paediatrician I have worked with her for two years; since 2009 we run an initiative “Haydom-Friends” to sustain medical care for affected children in Tanzania as well as Zanzibar. When possible they are being operated, simple wheelchairs are locally built for them, changing their life to the better. 

Little Theresia was born near Haydom village; at birth doctors discovered her „open back“. Her feet were already deformed due to the paralysis of the nerves. Fortunately, she was successfully operated and the back was closed. But, as so many children with spina bifida in Africa, she never learned to walk, her mother was never assisted to manage the disease, and Theresia spent the day sitting in a corner of her parents’ mud house. Unable to control her bladder, deep pressure sores appeared on her skin. Nobody came to play with her, attending school was not possible as she was not able to move herself around. 

There are more than 600 children in Tanzania and Zanzibar being born with the spinal defect each year, compared to 50-60 in Germany for example. The most common irreversible spinal birth defect is thought to result from a combination of genetic, nutritional and environmental risk factors. Worldwide, it occurs in 0,1 to 5 of 1000 births. Spina bifida is more common in teen mothers. Taking B-vitamin folic acid during a pregnancy reduces the risk by 70 per cent. But knowledge and awareness is often very poor. Haydom Hospital, built in the late 1960s, is offering medical care and long term treatment for these children.

When the parents brought little Theresia to us, she was three years old, shy and scared.  The first step usually is, to teach mothers how to use a catheter for her children. For the first time the little girl woke up dry and clean, her wounds began to heal. But she remained silent, she had been socially isolated for too long. Only by the time she received her wheelchair through the program, Theresia gradually started to discover her new freedom of mobility and opened up. She began to talk, seeking contact to other kids of her age. 

And this year, she demonstrated with us. Parents, medical staff and children worldwide were out in the streets on International Spina Bifida and Hydrocephalus Day on October 25, from Haydom to Stone Town and throughout Tanzania. This year´s motto: Ondoa vikwazo vyu huduma - no barriers for children. Several adults with the impairment in Tanzania have even managed to climb Kilimanjaro! Our organisation “Haydom-Friends” has followed-up more than hundred children with the birth defect here, and is currently trying to raise funds to build a “House of Hope”, a shelter for education and training - and for Theresia to operate her deformed feet before we can send her to school, now that she is 7 years old. As a doctor who founded this private initiative I see to it that every cent is used directly for the children and their parents.

Information: www.haydom-friends.org