Sunday, August 21, 2011

Fighting the Curse of the Cleft Lip

You try to eat, but food dribbles out; you go for a smile, but it emerges as a grimace. You attempt to speak clearly, but the slice across your mouth twists and blurs the words.

These are the daily struggles facing those born with a cleft lip (a small gap or an indentation in the lip, which may continue into the nose) or cleft palate (when the two plates that form the roof the mouth are not completely joined).

In the Western world, corrective surgery is relatively easy to access, and these kids often go on to live healthy, normal lives.

But in many developing countries, the scene is sharply different: millions of children suffer from unrepaired clefts and facial deformities, attempting to live out their lives without the corrective surgery they cannot afford or access. These children face stigmatization and isolation; they are often considered a curse to their families. Sometimes they are abandoned or killed at birth.

In Kenya, an estimated 30,000 children with facial deformities await surgery – especially in rural areas. International nonprofit organizations such as Smile Train periodically arrive and provide free surgeries and training for doctors, but these visits are few and far between.

Now, a small team of doctors based in Nairobi is taking action to change this reality.

During my work with HEART here in Kenya, I met a wonderful man named Dr. Meshach Onguti, who specializes in reconstructive surgery and works at a clinic in Nairobi. He and his family are good friends with HEART’s founder and director, so a few of us from HEART joined his family for dinner last week.

In the course of our conversation, Dr. Onguti revealed that he spends much of his time doing surgeries for free. Digging deeper, I learned that he and several other medical professionals have recently formed a team called “Help A Child Face Tomorrow,” traveling to rural hospitals across Kenya to perform free surgeries on clefts and facial deformities.

Since they are based in Kenya, the team is able to follow up on every child they treat – something that bigger international nonprofits are unable to do. They also conduct regular training of local doctors and surgeons in rural areas and attempt to reduce cultural stigma against cleft lips.

The traveling team consists of about 10 individuals: 2-3 surgeons (including Dr. Onguti), 2 anesthesiologists, 2-3 nurses, and several others. They transport all their equipment with them everywhere they go. They receive no compensation for this work, volunteering their time and paying for travel costs out of their own pockets.

Describing how dramatically children’s lives can change post-surgery, Dr. Onguti’s passion for his work was obvious. It beamed from his face. They need more medical supplies and money – if you want to donate, visit (they are still building this site, so it’s in beginning stages) – but it’s clear that the group is making a big impact. Check out one of their before-and-after photos:

At times, Help A Child Face Tomorrow also treats cleft lip and palate in adults. “For adults, the transformation is even more spectacular,” Dr. Onguti told me. “They have been dealing with this for their whole lives.”

This week, I plan to assist in photography and publicity at one of the team’s clinic days in Mombasa, if it works out. Whether in adults or children, clefts are a devastating condition, and surgery can give these people a chance at a normal life. No quirk of fate should have the power to take that away.