SMILES BETTER
Katie Piper meets kids with cleft palates in Ghana
EXCLUSIVE
A BLANKET of shame often smothers the families of children born with a cleft lip or palate in developing countries, with people even believing it’s a curse.
Mum-of-two Katie Piper, 42, was moved to tears when she met children and families with cleft palates when visiting Kumasi in Ghana, as an ambassador for the Smile Train charity.
She says: “I was told stories about children who were suffocated or drowned at birth, and of mothers told they’re ‘cursed’ because of an assumption the cleft was a result of something they did wrong in pregnancy.”
The world’s largest cleft-focused organisation, Smile Train empowers local medical professionals in more than 75 countries to provide free, safe, and high-quality cleft lip and palate surgery and to provide children with comprehensive care.
STIGMATISED
Loose Women TV panellist Katie has a deep understanding of facial difference after she was left with severe scars in an acid attack in March 2008. She was made an OBE in 2022 for her charitable work.
Speaking ahead of World Cleft Awareness Day on July 20, Katie recalls meeting five-month-old Richlove Amoateng and her mum Diana.
Before being contacted by Smile Train, Diana had not taken the baby out of the house.
Katie says: “Richlove lived in a rural village two hours outside Kumasi and was the second cleft child the mum had. When people came over, they’d put a cloth over her face.
“It wasn’t for lack of love for the child, but because her mum was being stigmatised by the community for having a cleft baby.”
A cleft lip is a gap or split in the upper lip, often accompanied by a cleft palate, present from birth.
It is a result of parts of the baby’s face not joining together properly in the womb, and affects around one in 700 babies worldwide every year. Why it happens remains unclear.
It is unlikely to be caused by anything that took place during the pregnancy, but it can be genetic.
Here, the NHS offers early treatment and support. But in many less developed countries there is a very long wait for care – or no care at all.
As well as altering their appearance, without surgery, children with the condition may struggle to eat, breathe and speak. In developing countries such as Ghana, a lack of awareness can mean shame is attached to cleft children. Katie says: “Some babies, like Richlove, are hidden away. It’s heartbreaking.”
Married to Richard Sutton since 2015 and mother to Belle, 12, and Penelope, eight, Katie says: “As a mum, I felt the pain of the mothers I met so deeply. A cleft means a baby can’t latch properly, which can lead to malnutrition.”
Babies born with a cleft also experience difficulty with hearing, dental matters and speech. Able to identify with their plight, Katie was 24 when a man she’d been dating had an accomplice throw sulphuric acid in her face.
She says: “The attack left me partially blinded, with severe, permanent scarring to my face, chest, neck, arm and hands. I couldn’t recognise myself when I woke up from a coma and I wanted to commit suicide.
“I also swallowed some of the acid in the attack, damaging my throat, and still require ongoing surgery on my throat to help me swallow and prevent scars closing it entirely.”
She started the Katie Piper Foundation in 2009, supporting adult survivors of burns and those living with severe trauma scarring, with both their physical and mental health.
She says: “I’ve experienced stigma myself. People stare, although being famous means that a lot of people know me, so when they see me for the first time it’s not a shock – and that is quite helpful.
“In Ghana, however, there was a huge blanket of shame for those with visible differences. The whole family is sometimes ostracised.”
But while burns can be hard to live with years after the event, she says: “With clefts, a single operation leaves
a tiny scar. Then people can live a normal life.” The family of one child she met is determined to change perceptions regarding clefts.
Katie says: “Eunice Obeng Yeboah is five and was born with a cleft.
“Her father was a pastor who provided cleft counselling to the community. Often people would go to their religious leaders for spiritual guidance before a doctor. Some then say that prayer is sufficient, when of course it is not.
“But Eunice’s father took her for surgery, never hid her, and went to his congregation to say, ‘I have a cleft child – this isn’t anything from
Satan or a curse. My wife hasn’t done anything wrong, it’s genetic’.
“By being so vocal, people came out to say they’d had a cleft child too, and had been hiding them. That was incredibly moving, powerful. It highlighted how important awareness is.”
After surgery, a tiny scar on Eunice’s face was all that remained. Katie says: “She was healthy, happy, and doing well at school. A real success story.”
LOTTERY
Estimated to have had more than 400 operations after her own attack, Katie says: “I feel lucky to be alive. Burn care is an ongoing process and one that will continue my whole life.
“But if this had happened in many other places in the world, I wouldn’t have survived.”
Katie feels global healthcare is a postcode lottery, continuing: “It’s just luck where you’re born and what services you have access to.
“One thing that I, politically, feel very strongly about is protecting the NHS. It’s so important that we don’t privatise it. Everyone should have equal access to healthcare.”
Katie, whose new book, Still Beautiful, has recently been released, says: “Whatever life throws at me, I am able to overcome it.”
After her own experience and seeing first hand the trials and tribulations of the families she met in Ghana, she says: “All we have to moan about here in the UK is the queue.”
For more information on Smile Train visit smiletrain.org.uk
There was a huge blanket of shame for those with differences. The whole family is sometimes ostracised