In the Wake of a Diagnosis

In a society where children with disability are often sidelined and misunderstood Hannah Awadzie a mother to a child living with cerebral palsy, is using her voice, and experience to make a difference. As a journalist and an advocate for children with special needs she is creating an inclusive space where these children and parents can access adequate support system though her Inclusive Family Alliance project.

Hannah Awadzie a journalist and the Founder and Executive Director, Inclusive Family Alliance

Discovering the Looming Doom

Hannah, like many young girls in Ghana, dreamed of becoming a mother and raising healthy children. However, life took an unexpected turn when her first child, Eyram, was born. In the first three days after Eyram’s birth, Hannah noticed her newborn baby had developed a yellowish tint to her skin, a condition known as neonatal jaundice.

“My daughter’s condition is common among newborns and occurs when there is a buildup of bilirubin in the blood, leading to yellowing of the skin and eyes but at the time, I was clueless. I was asked to bring her out when the sun rises and tilt her face towards the sun as it was believed that it will heal her” she indicated.

Despite her hopes that the condition will improve with time, the challenges persisted. After nine months of uncertainty and worry, Eyram was diagnosed with cerebral palsy, a neurological condition that affects movement and muscle coordination.

“I had no idea my daughter had a disability, I was just concerned because at nine months she was unable to sit on her own, so I went to hospital to see the doctor who causally told me it could be cerebral palsy. I went home thinking it was a curable infection until I googled the conditions then I realized this was a lifelong illness which could not be cured,” she recalled.

This diagnosis was a heavy blow for Hannah, who had envisioned a different path for her daughter.

Inclusive Family Alliance outreach project

An inkling Born Out of Adversity

Although there has been several research works on cerebral palsy in Ghana, knowledge about this condition remains minimal. The estimated incidence of cerebral palsy is approximately 1 in 300 live births, a statistic higher than the global average of 1 to 500 births according to Cerebral Palsy Africa. As a mother, Hannah was faced with the daunting task of navigating the complexities of raising a child with special needs and building a career.

“I began praying because I am a Christian and this was a natural response to this situation, one day at church, I approached a woman who had shared a testimony about her child being healed after two years of being unable to walk. I opened up to her about my own situation, and after listening, she thanked me for encouraging her. That moment made me realize that I, too, could offer hope and encouragement to other mothers raising children with special needs. This realization is what inspired the birth of the Special Mothers Project.” she stated.

The Special Mother Project, now known as the Inclusive Family Alliance, began as a small WhatsApp group of just 10 mothers whose children had similar impairment. Today, it has grown into a community of around 400 mothers. The initiative offers an online platform where parents can connect, share information, support each other through peer counselling and access resources.

Hannah Awadzie second on the left in a picture with the former minister of housing and information

Balancing a Career and catering For A child Living with cerebral palsy

Being a journalist comes with its own weight of unpredictable hours and an ever-demanding pace. Balancing that with the extensive care needed for a child with cerebral palsy, which often includes physical therapy, occupational therapy and frequent medical checkups, created a near-constant tension.

“I could not go for programme assignments like every other journalist. I felt like my career was at a halt. Prior to child birth, I had several opportunities to travel with prominent people in or outside the country but now I am compelled to work remotely as an editor putting a strain on my growth” she expressed.

Realizing she could not care for Eyram and her two other children, she explored hiring a nanny, but the cost was often too high. As a result, she had to either leave Eyram with someone she trusted or, when that wasn’t possible, take her along to the office.

“There was a time I was selected to be a delegate at a meeting with former President Nana Akufo-Addo at the Flagstaff House, to discuss issues concerning people with disabilities. Unfortunately, I couldn’t find anyone to take care of my daughter early enough, so I arrived late and I wasn’t allowed to enter. I got back home very disappointed” she expressed.

As a mother, she admits catering for a child with special needs presents a soul draining yet fulfilling sentiment  which she captures in her article titled “Motherhood: A Messy Privilege.” An opinion piece which reflects the daily challenges: sleepless nights, emotional exhaustion, unexpected detours, and the physical and mental demands of raising a child. But amid the chaos lies the “privilege”,  a unique and profound honour of nurturing, guiding, and witnessing the growth of another human being.

Advise to Mothers

Hannah admonishes mothers to find support, focus on the small victories and hard-won moments of grace that make motherhood a messy yet rewarding privilege. As we celebrate Mother’s Day, let us remember the burden and grace of being a mother. Hannah Awadzie’s journey serves as an inspiration to all mothers and young girls, reminding us of the strength and resilience that defines motherhood.

Editor: Elizabeth Nana Adjoa Bonney