Four years ago, Vivian’s life changed forever. She was heavily pregnant with her first child, James, and filled with joyful anticipation. But that joy quickly turned into a painful journey.
During her pregnancy, Vivian fell seriously ill with a high fever. Without access to timely treatment, the illness lingered into childbirth. She laboured for hours at Luwero Hospital, and when James was finally born, he didn’t cry. Panic set in as midwives worked to resuscitate him.
Fearing for his life, Vivian and her baby were referred to Kiwoko Hospital’s Neonatal Intensive Care Unit (NICU), where they spent almost three agonising weeks fighting for his survival. As a Centre of Excellence and Referral Centre, Kiwoko Hospital is equipped to provide higher levels of care for more complex cases. Here, James received around the clock, high-quality care from skilled doctors, midwives and nurses.
When James was finally well enough to go home, he was discharged into Adara’s Hospital to Home (H2H) programme, which supports high-risk infants both in hospital and after discharge. Through H2H, Vivian received training in the NICU on what to expect when she took James home.
She was then supported by a network of community health workers (CHWs), specially trained in the care of small and sick newborns.
A CHW visited Vivian and James every two weeks, offering check-ins and counselling. It was during these visits that concerns were raised about James’s development. The CHWs suspected he might have a neurodisability.
Vivian wanted to help her son. But when she shared her concerns with James’s father, she was met with abuse and rejection. Sadly, this is not uncommon in Uganda, where there is stigma around children living with disabilities, leading to low father involvement and high rates of domestic violence. There are even perceptions that having a child with a disability is a curse or punishment for wrongdoing.
Feeling she had no other choice, Vivian made the difficult decision to leave. Alone and with nowhere to go, she moved in with her elderly grandmother. As time went on, James began to show clear signs of developmental delays and was constantly sick. After he had a seizure, Vivan rushed him to Luwero Hospital, where he was immediately transferred to Kiwoko Hospital for further support.
It was here that Vivian was first introduced to Baby Ubuntu by James’ nutritionist, who connected her with Sam Semakula, the head of the programme. Sam sat with her, listened to her struggles, and gave Vivan her first dose of hope.
He explained that Baby Ubuntu is a programme of early care and support that aims to improve quality of life for children with moderate to severe neurodisabilities and their caregivers. Sam invited Vivian and James to a Baby Ubuntu group session at Luwero Hospital. Vivian says that single meeting changed their lives.
“I thought I was the only one with a child like James. But I found other parents – some with children in even more challenging conditions. I no longer felt alone.”
Baby Ubuntu provides caregivers with the emotional and practical support they need to maximise child development. This community-based programme is led by healthcare workers and expert parents who have a child with a neurodisability. It also works to combat superstition and discrimination surrounding disabilities in Uganda.
Through Baby Ubuntu, Vivian learned that disability is not a curse. She finally got answers to the questions that had tormented her. For the first time, she stopped blaming herself and started embracing her child with love and confidence. She was trained on how to care for James, how to feed him, play with him, stimulate his development and handle seizures.
“When I joined, he was only breastfeeding and severely malnourished,” she recalls. “Now I know how to prepare his food, how to position him, how to live with him, and work with him. I had lost so many jobs because I didn’t know how to manage, but now I’m able to work doing house laundry, taking James with me.”
But their story doesn’t end there. After participating in the programme and seeing how it transformed her and James’s life, Vivian trained as an expert parent facilitator. Vivan now leads a Baby Ubuntu group, supporting and mentoring other caregivers of children with disabilities.
“Being selected to become a parent facilitator is the greatest honour I have ever received,” she says proudly.
Vivian is now helping others just like her. Baby Ubuntu has given her the support network she was sorely missing – and the strength to build one for others.
“I was seen as a burden by my own family. Even my siblings had no space for me. But I was determined to survive with my boy. And now, I’m here to build that same hope in others.”
Today, Vivian and James are thriving. From a place of rejection and despair, Vivian has grown into a bold, joyful, strong woman with the support of Baby Ubuntu. The resilience she built has turned her pain into purpose.
“I now laugh more, cry less, and love deeper. James is not a curse, he is my blessing, my teacher, my strength.”
