Long ago, children born with cleft lips in Europe were seen as proof of not just the child’s demonic nature but of the mother's as well. Both were quickly eliminated.
Surprisingly, that was not the only misconception about the condition, sometimes wrongly referred to as harelip — a comparison to rabbits, which have a normal split lip.
Clefts are still more common in Europe and Asia today compared to Africa. The difference is that children those countries are more likely to get medical help than those born in Africa.
In Kenya, the condition affects in one every 500 children, mostly in remote places like northern Kenya.
Halima Osman’s baby was born with a split lip eight months ago. Baby Sabrina Bishar was kept covered most of the time, to keep off curious stares and perceptions of a curse or witchcraft.
Two weeks ago, Halima travelled 12 hours from Wajir to Nairobi for a surgery that would change her baby’s life for good.
“Cleft repair surgery is simple, and the transformation is immediate,” says Dr Martin Kamau, a lecturer at the University of Nairobi’s human anatomy department, and an oral maxillofacial surgeon.
While no one knows exactly what the causes are, most experts agree they may include a genetic predisposition. Also attributed are environmental issues, such as drug and alcohol use, smoking, maternal illness, infections, and lack of Vitamin B, also known as folic acid.
REASON TO SMILE
Dr Kamau operated on the eight-month-old baby Sabrina at the Care Hospital in Eastleigh. He is one of the medics involved in operations by Smile Train, an international charity involved in free cleft repairs across Africa.
The mother says she is more comfortable in Nairobi and can also visit relatives in the populous Eastleigh Estate.
One of Halima’s relatives was also born with a cleft, and this, therefore, seems like a genetic disposition.
It’s an early surgery, beginning at 7am. Baby Sabrina is already anaesthetised and is positioned with a cushion under her shoulders and neck, so that her head is tilted back.
A green medical sheet has covered the little girl’s entire face, leaving only the mouth and the nose.
Dr Kamau has conducted hundreds of such surgeries in Kenya, Somalia, Zimbabwe, DR Congo, Tanzania, Rwanda, Cameroon and India, among other countries.
The operation should take only about an hour, he says. Sabrina has a cleft lip, which is milder compared to cleft palate.
“In cleft lip, all the components are there — the skin and the muscles — but you have to bring all those components together. Also, you have to try and perfect the operation, so that the lip looks perfect,” Dr Kamau says.
Palates, where the roof of the mouth does not unite properly, are more complex to fix than closing a clip lip.
“A cleft lip may require one or two surgeries, depending on the extent of the repair needed. We conduct the first repair usually when the baby is around three months old,” Dr Kamau says.
“For the repair of the palate, after the first surgery, one may require several surgeries over 18 years,” he explains.
He says the first palate surgery is best done between six and 12 months to create a functional palate, reduce the chances that fluid will develop in the middle ears, and help in the proper development of the teeth and facial bones.
“The condition can have a considerable impact on a child's well-being in the early years, but the outlook is normally very good,” he says.
The major goals of surgical intervention are normal speech, minimising growth disturbances, and establishing a competent sphincter.
He says the problem in most parts of Kenya is delayed intervention. “Sometimes parents may not know this condition can be rectified, so they hide their children,” Dr Kamau says.
WRETCHED LIFE
Children who grow with this condition learn new ways of forming words, and those with the cleft palate often speak with a nasal drawl.
Such untreated children have an almost wretched existence. They have problems eating, breathing and speaking, and this carries the risk of severe malnutrition and even death for children.
Often, they are taunted and tormented for their disfigurement. Many of them cannot attend school, hold a regular job or get married.
“They face very difficult lives filled with shame and isolation, pain and heartache,” Dr Kamau says.
“Even if the condition is rectified later in their life, they may never be able to re-learn speech.”
The medic himself is a calming presence. As he cuts and makes stitches, he talks about many things, including the economy and matatus.
Dr Kamau says the Smile Train's sustainable model provides training and funding to empower local doctors in 85-plus developing countries to provide free cleft repair surgery in their own communities.
In Kenya, at least 20 hospitals now provide the surgeries. The Smile Train sponsorship covers subsequent hospital visits for mothers and patients.
The organisation operates under the belief that local doctors are in the best position to help the children in their communities, so that treatment is available 365 days per year.
Smile Train is currently celebrating 100,000 such surgeries in Kenya since the programme was launched in 2002. In Kenya, it has conducted 8,000 operations since 2002 in the 20 partner hospitals.
“We are done now,” Dr Kamau says.
At this point, Halima’s eyes well up in joy. Although baby Sabrina has several stitches to her lip, there is no split lip or lopsided nose. Everything is in its correct place.
She will need about three weeks for the incision to heal completely. She may have been the 100,000th baby.