Eleven babies with hydrocephalus and spina bifida were flown with their carers from South Sudan to Uganda, where they will receive rare, specialised treatment and surgery.
Baby Lojale Nanok Lochok seemed to be in perfect health at birth, but a month later, her head started swelling. Her abnormal crying was what confirmed suspicions that something was amiss.
But the first time Nanok was taken to see a health professional, she was misdiagnosed.
“They said it was just malaria,” her brother said.
When a baby presents with a fever, malaria is a common diagnosis. But fever may be an indication of another issue.
When there was no improvement, Nanok’s family sought a second opinion at a state hospital in Kapoeta, where the doctors diagnosed hydrocephalus.
But South Sudan lacks facilities where children with hydrocephalus or spina bifida can receive specialised treatment and surgery, and the children’s hospital that could help them was almost two day’s journey away in another country – along one of the area’s most notorious roads.
With a sick baby, the road trip would take a huge toll.
Mission Aviation Fellowship flew Nanok and eight other babies with their carers from Juba, South Sudan, to Tororo, Uganda, to receive specialised treatment at CURE Children’s Hospital of Uganda in Mbale.
The flight from Juba to Tororo took only three hours.
Ayen Maker Akech was grateful that pilot Ryan Unger could fly her with her baby to Uganda for this treatment.
“When my baby was born, I thought that this problem was mine alone,” she said. “But coming here, I discovered all these other mothers who have babies with the same condition. May God bless MAF.”
Ayen’s son Arkanjelo Ochem Albino Kuer is among the nine children due for surgery at CURE.
“If God is with me, it will go well.”
According to MAF in Uganda’s Country Director, Ruth Jack, these flights are crucial.
“It is a real pleasure for us at MAF to be able to provide these critical flights for children coming from Juba.
“These are some of the most important flights that we provide, and they come from the very core of who we are as MAF,” said Ruth.
Susan Tabu Osan’s baby is returning to CURE Children’s Hospital for review to ascertain the effectiveness of a shunt that was previously fitted to help relieve the build-up of fluid.
“Being in Uganda was a good experience,” Susan said. “The communication was sometimes challenging because I was speaking Arabic, but the medical care was good.”
In Juba, Usratuna Rehabilitation Centre screens the children and refers those who need specialised treatment to CURE, while MAF’s role is to ensure that the children and their carers are safely handed over to CURE staff at Tororo airfield in Uganda, the nearest airfield to Mbale where the hospital is located.
“I’m happy that I can go to Uganda with my child,” said 27-year-old Asunta Achol Atem from Kwajok.
Asunta’s two-month-old daughter Nybol Wak Wol was diagnosed with hydrocephalus and a growth on her back, during pregnancy. As a result, Nybol was delivered by caesarean section, and Asunta was sent to Usratuna centre for screening.
“As long as my child can be treated, there’s no problem,” Asunta said.