It is every parent’s hope, desire and prayer to wish their children to be born healthy, with the right weight, sound mind and physically well for best possible start of life, free from any challenges that some children face due to physical or mental health conditions.

Whether planned pregnancies or not, parents develop a sense of love, protection and the natural instinct to shepherd their children to life of self-actualisation.

Nothing prepares a parent to welcome a child with disabilities. While many parents still hold their children with love, and resilience as they seek to provide their children with the best care and opportunities, some feel a sense of disappointment and question why out of the billions of humankind in the world, only them have to undergo such.

In some societies, children born with disabilities are termed as ‘taboo’ or ‘cursed’, and face stigma as they grow pushing them into loneliness as it becomes hard to make friends. These children further develop low self-esteem affecting their confidence and their ability to achieve their potential.

Some parents opt to hide them, limiting their exposure to others and denying them basic needs like education.

In July 2000, Santhosh Mathews and his wife, Indian natives living in the United States welcomed their son with a cleft lip and palate among other conditions like holes in his heart and did not have a right eye or right ear.

Mathews, who later founded ‘A Love without Reason’ organisation in honour of his son to help other children born with cleft lip palate with the objective of creating awareness to parents narrated how people stigmatised his son, calling him a curse or a child of a rebel god.

“When my son was born with cleft lip palate, the immediate reaction of the people, the neighbourhood and the relatives was that the child was a curse or that the child was born during a solar eclipse or a lunar eclipse while others said that the child was a child of a rebel god,” Mathews explained.

“When the doctors examined my son, they said that they could not find any genetic reason or any other issue as to why he was born that way. Sometimes we do not know why these children are born like that but the best part is we can fix it. If a child is born with a cleft lip or palate or any other face anomaly, we can fix those patients and give them beautiful smiles, turn their lives around,” he added.

Matthews was speaking at Garissa Level 5 Hospital where his organisation is conducting a free medical camp for children, which involves assessment, testing and surgeries for children born with cleft lip palate.

About 30 children are scheduled to receive free surgeries to correct their appearance during the three-day medical camp. Normally, the surgery cost between Ksh250,000 ($1,930) to Ksh300,000 ($2,320). At least 244 children have also benefited from the Love without a Reason organisation countrywide.

Mathews called upon all communities and parents to stop stigma against children born with disabilities advocating for them to be given a chance to life, to school and other opportunities just like any other child.

He regretted that many children are hidden from the public out of ‘shame’, denied education or jobs and many of them have not had an opportunity to marry and have families.

“Sometimes because of stigma, many parents stop loving their child, sometimes the schools will not accept these children or when accepted are bullied by other children. My advice as a parent who has a child with these problems is to love them unconditionally,” he says.

“Parents also need to know that their children are children of God. These problems do not mean that they were not created by God. When my child was born, people called him a curse but today thousands of people have received free surgeries because he was born and so he was a blessing,” he added.

Willa Nangunye is a father of a five months old boy who was born with a cleft lip. When he saw the posters of the free medical camp on social media, he travelled all the way from Isiolo to Garissa to have his son attended to.

“When the child was born, I was shocked by what happened. Some people told me maybe it was a curse but I know they don’t have an understanding of these conditions,” Nangunye says.

During the interview with Nangunye, his son was in the operation room for surgery. The parent excited and hopeful that his child will have his lip corrected and grow with a beautiful face. He encourages parents in similar situations to seek medical assistance instead of blaming it on myths.

Cleft lip and palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. These conditions can vary in severity, but they can generally be treated with surgery and other interventions.

Cleft lip occurs when there is an opening or gap in the upper lip, which can extend up to the nose. It can occur on one or both sides of the lip and in some cases, it can also affect the gums and teeth.

On the other hand, cleft palate is a condition where there is an opening or gap in the roof of the mouth (the palate). This can be a small opening or extend through the entire palate. Cleft palate can affect the soft or hard palate and may also affect the nasal cavity.

• A Tell / KNA report / By Erick Kyalo