African Woman and Child Feature Service

There is nothing more devastating to new parents than the heart-wrenching news that the diagnosis that their precious newborn has a congenital condition.

Facing the uncertainties of lifelong disability and medical challenges in their offspring, parents say it is a lonely and painful place to be initially– but with time and perseverance it can also be a source of strength and a platform for championing issues that escape the attention of policy planners, health and education professionals.

Mr Eric Madete is one such parent.  He is also the chair of the Down Syndrome Society of Kenya (DSSK).  When his son Bradly Mukaye was born eight years ago, little did he and his wife know that their newfound joy in their first child was about to be turned upside-down on them. 

Shortly after the newborn’s arrival, his parents were referred to a cardiologist who gave them the diagnosis of Down’s syndrome. This is a condition caused by the presence of an extra chromosome either on the sperm or egg cell.

“We were traumatized the first time Mukaye was admitted in hospital,” he reveals. “The paediatrician could not pinpoint the problem hence the referral to a cardiologist and eventual heart surgery when the child was six months old.”

Many parents of children with Down syndrome have a story to tell that is similar to Mr Madete’s experience.  They say few health professionals are able to make a definite diagnosis at birth and precious time is lost in the first few weeks and months of the babies’ lives – when critical interventions need to be made to improve future chances for a better quality of life.

Down syndrome babies are born with health challenges, and older persons with the condition have an increased risk for certain conditions.

For instance, congenital heart defects, increased susceptibility to infection, respiratory and hearing problems, obstructed digestive tracts, sleep disorders characterized by pauses in the breathing rhythm and childhood leukemia occur with greater frequency in children with Down syndrome.

“Despite your children suffering from Down syndrome and various medical problems that accompany the condition, you should always be alert to new signs and symptoms that may show up,” Mr Madete advises parents.

Mr Madete, who has three other children after Bradly, cautions parents against blaming themselves for the condition suffered by their offspring. There are no answers as to why Down syndrome happens and parents are advised to accept that their child is different from others and to love them unconditionally.

The Down Syndrome Society of Kenya does not sweep the pain, anger, disappointment and frustration under a rug.  Rather it encourages parents to stay in touch with one another and tap into the unexpected reserves of courage and faith that exist among the 200 members of the society.

"Even though your son or daughter has Down syndrome, he/she can still have a long and fulfilling life like any other child,” adds Mr Madete.

Asked if he would live the last eight years all over again if it were possible, Mr Mudete laughs and says: “It is not easy to bring up a child with Down syndrome, but neither would I give up Bradly for anything.  He is a joy and blessing to my family.”

According to Mrs. Amar Panesar a special education teacher and proprietor of Circle Academy in Nairobi such children with Down syndrome are sweet natured individuals who excel in music, art and dance.

“They are useful, trusted and wonderful workers once they are appreciated by the society,” says Mrs. Panesar, a speech therapist specialist.

Mrs. Panesar is appealing for African values of kinship in taking care of children with Down syndrome to a void the unfortunate situation where children are hidden out of sight by their families.

“Why do we fail to integrate children suffering from Down syndrome with other children yet our socialization networks coupled with our extended family networks and warm nature is unrivalled in the world?” she asks.

Circle Academy offers only 10 vacancies at a time.  With a staff of eight specialized in language therapy, physiotherapy and physical education, Ms Panesar is concerned that her efforts are but a drop in the ocean.

“There are an estimated 30,000 or more children scattered throughout Kenya who would greatly benefit from this education intervention, but we need policy interventions to widen the net and capture these children and their parents.”

Mrs Panesar is concerned about the plight of children in rural areas and those living in the poor informal settlements in urban centres. Down syndrome affects one in 800 children worldwide.

The society’s coordinator Ms. Elizabeth Gitoho says plans have been finalized to start a regional center of excellence for research into the condition and an elaborate awareness campaign is planned for rural parts of Kenya in due course.

“DSSK aims at bringing all persons with Down syndrome, their parents, families, guardians and professional caregivers as well as individuals working with or interested in them,” she adds.

Ms Gitoho blames lack of adequate chromosomal testing kits in health facilities as a hindrance for families’ knowledge on the problem.

“Changing people’s negative perceptions about Down syndrome is another problem and is the reason people hide their children in their homes.”

The society is in the process of designing a strategy for disseminating adequate information to new parents, members of the public and the medical professional to improve the chances for early detection and appropriate interventions. 

The society is also calling for integration of children with Down syndrome in regular schools.  It is generally accepted that they would greatly benefit more from a normal school environment although they would still need specialized attention within such an arrangement.

This calls for a radical shift in education planning and budgets even as parents, caregivers and well-wishers struggle with the challenges of bridging appropriate early intervention mechanisms medically and socially.

An AWC Feature