Ensuring that children with disabilities thrive and achieve their full developmental potential.
Within walking distance of PIH/IMB Kirehe office, in a modest house located amidst a green Banana plantation live five years old Ineza Ndatimana Benita, her mother Mwubahamana Jeanine, her father Ndatimana Jean Pierre, and her one-year-old little sister.
Benita is a child with developmental disability, she spends most of her time with her mother and younger sister at home—she smiles back or mumbles sounds when her little sister's tiny hands reach out to her trying to play.
Mwubahamana and Ndatimana gave birth to their first daughter, Benita, during the first year of their marriage.
"On 12 August 2016 around 1 AM when my baby was born, we knew right then that something was strange because she didn't cry". Says Mwubahamana, Benita’s mother.
After she was born, Benita was then taken to the special neonatal care unit at Partners In Health-supported Kirehe Hospital, which has modern equipment and specialist medical and nursing staff readily prepared to care for premature and sick newborn babies, where she spent 2 months.
“She first cried when she was two months, even though, I would not actually call it crying. She made sounds and signs that showed she wanted to cry,” Mwubahamana recalls. “Her legs were crossed. Her arms were stiff. And she couldn’t open her eyes, they were always shut.”
Although their bond and love for their firstborn is strong and never-ending, Mwubahamana and Ndatimana have had to navigate a lot of obstacles to raise a child with disability in a rural area, where living conditions are poor and discrimination towards children with disabilities still linger.
Benita’s mother, Mwubahamana had just started her dream career in education, where she was a mathematics teacher at a local primary school training a generation of mathematicians—a booming profession in just less than 9 miles at Rusumo Rwanda-Tanzania Border. But she had to quit to take care of Benita full-time.
“I miss my students a lot, but I have to find how to repress that feeling. It’s difficult!” she says.
Unlike many fathers who often leave the family unit after discovering that their child is at high-risk for disability, Benita’s father, Ndatimana helps his wife to care for Benita and their 1-year-old toddler, while also riding a taxi moto to make ends meet.
Across Rwanda, especially in rural areas, most families receive little or no help from their extended families and neighbors to raise children with disabilities, who are often regarded as a curse upon the family.
However, Ndatimana and Mwubahama are not alone when it comes to raising Benita.
The Pediatric Development Clinic
Since she was born, Benita’s health has been monitored through the Pediatric Development Clinic, established by Partners In Health, locally known as Inshuti Mu Buzima, in collaboration with the Rwanda Ministry of Health.
The Pediatric Development Clinic (PDC) was developed by Partners in Health in 2014 to complement the All babies count program—famously known for reducing Under 5 mortality rates more quickly than any country in the history of the world, in addition to cutting maternal mortality in half.
But surviving the neonatal period alone is not enough. The PDC program provides structured follow-up with nurturing care and early care and support for high-risk infants born with perinatal complications to ensure they thrive and reach their full potentials. These high-risk infants are referred at discharge from neonatal care units (NCU) to PDC, from other medical services, or families can self-refer directly from the community.
“We have been following up on Benita’s health for five years. We keep a close check on her health, growth, nutrition, and development so she can reach her developmental potential,” says Mathieu Nemerimana, Pediatric Development Clinic Program Manager at Partners In Health/Inshuti Mu Buzima.
At each visit, Benita, and other children enrolled in PDC, receive family-centered, nurturing care interventions package that includes group counseling, routine clinical check-ups, developmental and responsive care, enhanced nutrition care for small and sick newborns, and integrated social support.
Children also get regular developmental monitoring and those identified with developmental disability are enrolled in a participatory group program of early care and support, known as “Baby Ubuntu”, where caregivers receive peer support for children with disabilities and their families. The Baby Ubuntu groups are facilitated by trained expert parents in partnership with healthcare workers.
In addition, Benita’s parents receive parenting education and early-stimulation coaching to improve supportive home environment enabling children to thrive and reach their full potentials.
"Lessons I learned showed remarkable improvement in Benita's life"
Benita’s mother Mwubahamana says that as a new mother there’s a lot she didn’t know about caring for a child born with disability but through practice and applying skills she learned from the PDC program she has become proficient.
“Lessons I learned from PDC like appropriate positioning, nutrition, play, and others showed remarkable improvement in Benita’s life and it has also availed us time to do other things because we feel secure when she is alone or sleeping. I want to share that secret with other parents”
Today, she is recording a tutorial video with set of useful instructions and tips to serve as a guide to other mothers who are caring for children with disabilities.
Thanks to the Grand Challenges Canada grant jointly acquired by Partners In Health/Inshuti Mu Buzima and the MRC/UVRI & LSHTM Uganda Research Unit to scale up the Baby Ubuntu bundle of the Pediatric Development Clinic and the child disability program, Mwubahamana’s wish to transfer her knowledge to other mothers will propel forward.
As part of a bigger plan to scale up the PDC and Baby Ubuntu Bundle, the grant is being used to produce 3-4 mins short videos providing a visual explanation of the programme core content and participatory adult learning techniques. The videos will then be integrated into a tablet application that will provide the resources to parents’ group facilitators, families, government, and other partners that want to replicate the model.
“Advances in perinatal intensive care have been associated with improved survival of high risk neonates but have not resulted in decreased morbidity. High-risk groups of survivors, such as those born preterm or with ill-health, who are destined to have higher than expected rates of health or developmental problems, and for whom more structured and specialized follow-up programs have to be warranted to ensure that they not only survive but also thrive and achieve their full developmental potential.”
Dr. Erick Baganizi
Watch the video to learn more about the Pediatric Development Clinic: Reaching Milestones with At-Risk Children in Rwanda
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