It is every parent’s hope, desire, and prayer to wish their children to be born healthy; with the right weight, sound mind, and physical well-being to have the best possible start in life, free from any challenges that some children might face due to physical or mental health conditions.
Whether planned pregnancies or not, most parents develop a sense of love, protection, and instinct to want their children to live their best lives with fulfillment.
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 they 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 organization in honor of his son to help other children born with cleft lip palate and create awareness for parents narrates to KNA how people stigmatized 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 neighborhood, 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 said.
“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 facial anomaly, we can fix those patients and give them beautiful smiles, turning their lives around,” he added.
He was speaking at the Garissa Level 5 Hospital, where his organization is conducting a free medical camp for children, which involves assessment, testing, and surgeries for children born with cleft lip palate.
About 30 children will receive free surgeries to correct their appearance during the three-day medical camp. Normally, the surgery costs between Sh 250,000 and Sh 300,000.
At least 244 children have also benefitted from the Love without a Reason organization countrywide.
Mathews called upon all communities and parents to stop the stigma against children born with disabilities, advocating for them to be given a chance to live, to go to school, and to have other opportunities just like any other child.
He regretted that many children have been hidden from society, denied education or jobs and many of them have not had an opportunity to get married and start their own 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 had a child with these problems is for parents to love their children unconditionally,” he narrates.
“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 the father of a five-month-old boy who was born with a cleft lip. When he saw the posters of the free medical camp on social media, he traveled from Isiolo to Garissa to have his son treated.
“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.
As KNA speaks to Nangunye, his son is in the operation room with doctors having surgery, and he is so happy 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 does not form properly during pregnancy. These conditions can vary in severity, but they can generally be treated with surgery and other interventions.
A 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. A cleft palate can affect the soft or hard palate and may also affect the nasal cavity.
