What it's like to be born with a cleft lip or palate in developing countries

Babies born with the condition in the developing world often face isolation, rejection or worse

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Smile Train

Thanks to medical advancements, cleft lip and palate are rarely an issue for babies born in developed countries. But children around the world are not always so lucky.

When a young woman gave birth to a baby boy with a facial deformity in a village near Kumasi, Ghana, terrified locals carried him to the river for sacrifice to the Gods. Luckily, a man named Alex stepped in and stopped them before taking the child to Accra, the capital, to a surgeon named Dr Solomon Obiri-Yeboah who performed a simple and transformative procedure on the baby to repair his cleft lip and palate.

"When the baby returned to the village after surgery, everyone was so happy. The whole community invited me and my team to a celebration and they named the baby after me. Now the baby carries my name and we've had the opportunity to educate the community and surrounding villages," reveals Dr Obiri-Yeboah.

Susannah Schaefer, CEO of international children's cleft charity Smile Train, which funded little Solomon's surgery says:

"Babies are born with clefts everywhere in the world. This includes the UK and other Westernised countries, but you rarely see children with unrepaired clefts in the UK because treatment is offered for free on the NHS and is typically carried out very soon after the child has been born."

But in the developing world, where more than 170,000 babies are born with clefts every year, many children aren't as fortunate. Families in these countries often don't have access to quality healthcare services and lack the resources to pay for treatment.

Cleft lip and palate happens when mouth tissue doesn't fuse properly during development in the womb during the first trimester. Scientists aren't totally sure what causes this to happen, but experts believes poor nutrition during pregnancy and infections shortly after conception could trigger the condition.

Dr Solomon Obiri-Yeboah
Smile Train

Some people assume that cleft lip and palate is just a cosmetic problem, but it can cause serious health problems as babies born with the condition will often struggle with eating, breathing and speech development.

Dr Obiri-Yeboah says there can be a huge amount of stigma associated with birth defects in Ghana. Children born with clefts there are routinely killed at birth or rejected by their communities. They're often not sent to school or allowed to participate in social activities, he reveals.

"When leaving the home, it's not uncommon for the families to hide their babies and wrap them up, so that others can't see their clefts. Often, the father leaves the mother because they think it's taboo that the mother would have a child with a cleft."

And it's not just Ghana where shame and stigma can be a problem. Susannah says:

"Many people are shocked to learn that, millions of children in developing countries with unrepaired clefts live in isolation and are often shunned by their communities. For example, babies born in Uganda with clefts are given the name 'Ajok' which means "cursed by God," with some newborns abandoned right after birth or even killed because of the lack of awareness around the condition."

But with better access to healthcare, the condition can be easily treated. Reconstructive surgery for clefts has evolved over the last 50 years and modern techniques and procedures have come a long way. Most surgeons agree that cleft lips should be repaired by 3-6 months. While, cleft palates typically can be repaired between 9 and 18 months. Though surgeries on older children will likely still be successful.

Six-year old Osawa from Tanzania before and after surgery to repair his cleft
Smile Train

Children with clefts all over the world can be helped with surgery that can cost as little as £150 in a procedure which takes around 45 minutes. Training and funding local doctors to perform the surgery in their communities can massively improve lives. These surgeons can then go on to train others in the profession to give children born with clefts the confidence to smile.

To find out more about Smile Train go to https://smiletrain.org.uk/

Once-upon-a-time laboratory scientist who soon realised she preferred interviewing interesting people and writing to conducting haphazard experiments.
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