NAIROBI, Kenya, Aug 20 – It is 5 o’clock on a chilly Friday morning, and Mzee Taiko and his wife Melicile have embarked on a long journey to Nairobi for a free screening and reconstructive surgery on cleft lip and cleft palate at the Nairobi Hospital.
With them is their son Sankok, who is a year and two months old. Their son was born with a cleft lip, and even though cleft lip and palate is one of the most common congenital malformations affecting one in every 700 newborns in Kenya, they did not understand it. Neither could they afford between Sh100,000 – Sh250,000 for corrective surgery.
The economic and social challenges the family has had to go through in search of their son’s treatment is immeasurable. For instance, the journey to and from Nairobi will cost him Sh10,000.
Mzee Taiko aspires to see his son live a normal life thanks to a free surgical program at the Nairobi Hospital which will see close to 25 patients with cleft lip and cleft palate get corrective surgery.
The hospital in partnership with the “Help a Child Face Tomorrow” (HCFT) campaign aims at providing specialized outreach, medical services and interventions while assisting communities irrespective of their religious beliefs, political and ethnic diversity.
“We have specialized surgical programs monthly where we go for medical missions together with a highly specialized medical team, which includes: a reconstructive and maxillofacial surgeons, orthopedic surgeons, an urologist, obstetrician/gynecologist and a general surgeon,” explained Meshack Ong’uti, a reconstructive surgeon at the Nairobi Hospital.
At the health facility, Mzee Taiko and his family make their way to the screening room which by now is thronged by patients of all ages and from different counties.
“Screening is the first process that every patient has to undergo,” explains Ong’uti.
“This ascertains that there are no pre-existing conditions, if all is well then the patient is booked in for the surgery.”
In Kenya, one in every 700 births results in the cleft lip and cleft palate deformity with many patients relying on such camps because they cannot afford to pay for the surgery, which is considered cosmetic.
Causes of the malformation are still unknown. However, this deformity is most believed to be caused by any of the three main factors.
Cleft deformities can be inherited gene or acquired characteristics from one or both parents. Other causes are due to unhealthy pregnancy. Women getting pregnant at an early age, living in a poor environment and are exposed to several toxic elements, such as cocaine and alcohol can give birth to babies with this type of deformation. Finally, it can be caused by genetic syndromes such as:
Pierre Robin syndrome – a condition in which an infant has a smaller than normal lower jaw, a tongue that falls back in the throat, and difficulty breathing.
Down syndrome – a chromosomal condition that is associated with intellectual disability, a characteristic facial appearance and weak muscle tone in infancy.
The third syndrome known as Waardenburg syndrome is a rare genetic disorder most often characterized by varying degrees of deafness, minor defects in structures arising from the neural crest and pigmentation changes.
Dr Ong’uti however, states the importance to create awareness that this is a medical condition that can be corrected when children are still young. It is not a curse, he said.
“Many children are hidden, condemned, abandoned or killed at birth, while others get bullied, live isolated and stigmatized, and their children are hidden from public view.
Corrective surgery for cleft lip is done on children who are 10 months old, weighing four to five kilograms, while for cleft palate; surgery is done when the child is a year old and healthy.
The corrective surgery includes a multidisciplinary team of specialists and may include an oral surgeon, plastic surgeon, otolaryngologist, pediatric dentist, audiologist, speech pathologist, pediatrician, geneticist, nutritionist and social worker.
After the lip is repaired through a cleft lip reconstruction, doctors place a small prosthetic in the mouth to cover the hole. Palate repair can then be done in about one-year mark.
Children dealing with cleft lip or cleft palate usually need care throughout their lives to solve the problem.
Bone grafts may be needed to repair the skull and orthodontic problems are not uncommon.
Children may also need to help with speech, and many young people and adults opt for a more cosmetic surgery to improve the appearance of the lips.
“In short, this is a problem a patient will have to deal with for many years. The good news is that on your own, cleft lip and palate is not life-threatening in any way! These are problems that can be repaired,” Ong’uti noted.
Lucia Moko, a journalist who was born with the cleft lip and palate deformity says she owes it to the corrective surgery performed on her at six months which has allowed her to live a normal life.
“Children living with the condition miss out on school and adults can’t work because of the ridicule,” Moki stated adding that there is need to push for the discussion to have the government and insurance cover the corrective surgeries.”
She is also the founder of an organization named “Cleft is Click Kenya” that connects parents, families, and friend of people living with the condition to treatment as well as encourages them against hiding their children as the condition is treatable.
“New parents everywhere are concerned about issues arising out of these facial deformities, but as with many birth defects, if treated soon after birth, the baby can go on to live normal, healthy life. With a team of doctors on your side, your child should get the best treatment possible.”
The Nairobi Hospital is the meantime urging parents with children living with the condition as well as adults to avail themselves for free corrective surgery in September.
“We will kick off with screening on September 13 then the surgeries will commence between the 14 and 15,” said Dr Ong’uti.
Between 600 to 700 surgeries are done in Kenya annually.
-About Cleft lip and Palate –
Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don’t close completely.
Cleft lip and cleft palate are among the most common birth defects. They most commonly occur as isolated birth defects but are also associated with many inherited genetic conditions or syndromes.
Having a baby born with a cleft can be upsetting, but cleft lip and cleft palate can be corrected.
In most babies, a series of surgeries can restore normal function and achieve a more normal appearance with minimal scarring.