Kenyan medical team offers free cleft lip surgeries

Struggling to eat, breathe, speak, and even smile, children born with a cleft lip or cleft palate—in essence, a gap or slice across the face where the mouth did not form correctly—face a difficult life if they cannot obtain surgery.

When a child is born with a cleft in the U.S., corrective surgery is relatively easy to access. The initial disfigurement can be shocking: a cleft lip (a small gap in the upper lip) may also be accompanied by a cleft palate (when the two plates in the roof of the mouth are not completely joined).

Doctors recommend that children born with a cleft undergo corrective surgery within the first 12 to 18 months of life, and most American babies do. A thin scar line below the nose and across the lip may be the only trace left of a former cleft lip.

In developing nations worldwide, the scene differs sharply. Millions of children face life with a disfigurement they cannot afford to treat – despite the fact that it takes as little as 45 minutes to repair a cleft lip, a surgery costing about $240.

In Africa, particularly in villages and rural areas, such birth defects often remain a source of shame.

“The culture believes that it’s a curse, that no one will bother with you, that no one will marry you,” said Sheila Kaniky, a preoperative nurse at Coast Province General Hospital in Mombasa, Kenya. “I think that more education is needed for rural areas.”

Based in Nairobi, Kenya, a small organization called Help a Child Face Tomorrow (HCFT) is taking action to change this reality.

Starting Small

 Founded in 2006 by Dr. Meshach Onguti, former director of Kenyatta National Hospital, HCFT consists of a small team of medical professionals who volunteer their time to travel around Kenya and surrounding countries, performing free reconstructive surgeries.

This is the first such initiative created and run entirely by Kenyans, operating year-round.

“When you see patients who can’t get reconstructive surgery for cleft lip and palate, and the children don’t go to school, the adults can’t work, all because of ridicule, poverty and lack of specialized services – you have no option but to offer your time and skill to assist,” Onguti said. “You can’t afford to look the other way.”

The organization is not large: about 30 to 40 professionals are associated with HCFT, dispatching a 12- to 17-person medical team for each mission. The traveling team includes reconstructive surgeons, nurses, anesthesiologists, logistics and photography volunteers, and specialists such as dentists or orthopedic surgeons.

Size notwithstanding, the team typically examines and operates on hundreds of patients in a single mission. They also spend significant time educating communities, attempting to reduce the cultural stigma against clefts.

Scientists are unsure exactly what causes the congenital defect that results in a cleft lip or palate, but both genetic and environmental factors—maternal illness, drugs, malnutrition—may play a role, according to Operation Smile. In rural Africa, poverty and malnutrition lurk as ever-present threats to child and maternal health.

Onguti estimates that 15,000 to 20,000 Kenyans with facial deformities such as clefts remain in need of surgery. By initiating local campaigns and conducting regular training of doctors and surgeons in rural areas, HCFT volunteers hope make a dent in this number and ultimately decrease dependency on international aid organizations.

Stretched Thin

Since its founding, Help a Child Face Tomorrow has performed surgeries on more than 7,000 patients and examined close to 40,000 through organized medical outreach programs in Kenya and nearby countries.

In the past 10 months, HCFT travelled to Somalia, Rwanda, the Democratic Republic of the Congo (DRC), Uganda and Zambia in addition to Kenya.

From August to November 2012, HCFT will travel for missions in the DRC, Rwanda and Somalia as well as multiple missions across Kenya, including the towns of Busia, Eldoret, and Kabarnet.

“Help a Child Face Tomorrow has grown so tremendously that our resources have been outstretched,” Onguti said. “We have done close to 1000 surgeries in last 12 months.”

HCFT remains in need of funding and supplies. While HCFT’s works is partially funded by Smile Train, HCFT’s volunteers receive no compensation and often pay out of pocket for individual travel costs.

“Our services are appreciated by the authorities,” Onguti said. “The only difficulty is that it is becoming very expensive to transport and accommodate the team for 10 to 14 days.”

A single HCFT mission can cost anywhere from $15,000 to $45,000 depending on the destination,  Onguti said.

Other challenges facing HCFT include the need for more volunteers, the difficulty of identifying those in rural areas who need surgery, and ensuring that patients have transportation to the hospital.

At an August 2011 medical mission in Msambweni, Kenya, patients came from as far as 100 to 350 kilometers away, traveling two days on the road. Some were children; others were teenagers and adults who had lived their whole lives with a cleft.

A Personal Impact

“Where I live, I am the only one who has the cleft lip,” said 17-year-old patient Malau Kombo before his surgery in Msambweni. “People ask me a lot of questions – there are a lot of stares. People used to talk behind my back about my problem.”

Kombo had dealt with stigmatization and isolation for 17 years; the surgery took less than 30 minutes.

 

Paul Kahuho, age 23, was studying to obtain his bachelor of commerce at the University of Nairobi. However, his cleft lip and difficulty speaking had hindered his dreams.

“Communication is very important,” he wrote on a paper before undergoing surgery in Msambweni. “After this I think I’ll be able to look for a job easily.”

Post-surgery, verbal communication was no longer an obstacle for Kahuho.

When it comes to teen or adult patients in Africa, correcting a cleft lip or palate can be a radical life change. Many of these individuals have struggled through years of isolation, with families frequently keeping such children hidden out of public sight.

“For adults, the transformation is spectacular,” Onguti said. “They have been dealing with this for their whole lives.”

While Help a Child Face Tomorrow is still in its beginning stages, Onguti hopes that HCFT’s efforts to train doctors and surgeons across Africa will ultimately lead to a day when no child will have to face life with a cleft lip.