With an estimated one in 700 born with some variation of cleft lip and palate, it ranks as one of the most common birth defects in the world. Once repaired, most people born with a cleft grow up to live healthy lives with few if any complications.
While the vast majority of infants born with a cleft in the West have immediate access to comprehensive cleft care, there are millions of children in developing countries who live with an unrepaired cleft.
The reason for this is manifold, but poverty is an important one, as is the lack of surgeons trained to perform cleft repair in poorer areas of the world.
Lack of awareness about the cause of cleft, coupled with superstition and cultural myths, can also present an obstacle to adequate cleft care. In some remote communities, a child born with a cleft is considered cursed and rejected by its family.
Children with an unrepaired cleft are often victims of discrimination, and their families are too ashamed and scared to take them out in public. Sometimes the mother of a cleft child is accused of having done something wrong for her child to be born with a cleft and often mothers do indeed blame themselves.
Whatever the reason for an unrepaired cleft, the reality is that such children are much less likely to be accepted into their community, attend school, let alone get married and have children of their own.
That is why I support Smile Train, an international children’s charity that provides free cleft repair to those who could otherwise not afford it or whose families are unaware of the surgical procedure that will completely transform their child’s life.
Some of the children helped by Smile Train include Osawa, a 6-year old boy from a remote village in Tanzania, who travelled thousands of miles to Dar-Es-Salaam to have his cleft repaired. Although the surgery was free, his parents couldn’t afford the bus fare to the city, so the hospital arranged for Osawa and his mum to be picked up by car and driven all the way to the cleft clinic.
Pinki, a shy 5-year old girl from rural India, whose family found out about the possibility of cleft repair thanks to a wider community initiative. Cleft repair changed Pinki’s life. No longer hidden away at home, she was now able to attend school with her sister, and as she danced around the school playground with the other children, her beautiful smile was a testament to just how much her life had been transformed by one relatively simple operation.
Although there are a number of charities that offer cleft care to children in developing countries, I’ve chosen to support Smile Train for their sustainable approach to cleft care.
In addition to free cleft repair, Smile Train also provides training, funding and resources to make it possible for local doctors in more than 80 developing countries to provide cleft care in their own communities.
According to Smile Train, clefts are primarily an economic problem, not a medical one. For, while the surgical procedure itself is relatively straightforward and low risk, cleft-afflicted families in very poor, and often remote, communities can’t afford the cost of travelling to a clinic that offers cleft care, let alone pay for the operation itself.
Lack of information about cleft also means that families are often unaware of existing cleft treatments. As a result, all too many children with cleft in developing countries do not receive the reconstructive surgery they need and which is so vital for their long-term health and wellbeing.
I’d been a passionate supporter of Smile Train for several years when I was offered an opportunity to observe their work first-hand. That’s how I found myself making the long journey from the UK to Guatemala, where I was due to visit local clinics that work in partnership with Smile Train to provide free cleft care.
Reading up on Guatemala ahead of my journey, I learned that more than 600 babies are born with a cleft in Guatemala each year, and many of them don’t receive the treatment they need. Poverty and illiteracy are huge problems in rural areas and access to medical resources scarce. Popular beliefs about the causes of cleft are another problem; many believe that babies born with cleft are cursed or that their mothers are at fault.
A half-hearted attempt to learn a smattering of Spanish before the trip had ended in total failure. I used to be able to speak a fair bit of French, Italian and Bulgarian, but now that I was trying to teach myself Spanish as well, all these languages were getting mixed up in one unintelligible linguistic broth.
My then six-year-old daughter who learned Spanish at school offered to teach me:
“Spanish is easy peasy, mummy. Repeat after me: Hola, que tal, muy bien, gracias. That’s it; now you speak Spanish.”
My final destination was Antigua, a charming city with colourful houses, Spanish colonial architecture and cobbled streets. Until 1773, when it was hit by a series of devastating earthquakes, Antigua served as the capital of Guatemala.
On arrival, I was introduced to the other Journey of Smiles participants, most of whom had flown in from the US and Mexico. We were all strangers to each other but our shared commitment to supporting Smile Train’s vital contribution to cleft care around the world had brought us together, and by the end of our journey we all had, I believe, formed a special bond.
More than half of Guatemala’s population is of indigenous Mayan origin, and they often live in rural parts of the country where poverty is widespread and access to medical facilities scarce. Cleft-afflicted children and their parents, therefore, have to travel long distances from their home villages to the nearest clinic.
Although Smile Train pays for the surgery and aftercare and helps with transportation, missing a couple of days’ work makes a huge difference for a Mayan father who depends on his meagre wages to feed his family.
The first item on our ambitious itinerary was an early morning visit to a clinic in the heart of Antigua: Centro Infantil de Estomatologia is a private, non-profit clinic that focuses exclusively on cleft care. First established in 1966 by Guatemalan doctor Oscar E. Asensio, the clinic has since been taken over by his son, Dr Rodolfo E. Asensio, who works with a multidisciplinary team to provide comprehensive cleft repair at no cost to the patients.
Two operations were scheduled for the morning of our visit: a lip repair and a palate repair. As a general rule, a baby born with a cleft lip and palate will undergo lip repair first, followed by a separate operation to close the palate.
There had been some talk about the possibility of us viewing an operation during our visit, but due to the clinic’s small size, only three of us would be allowed in the operating theatre, Cecilia, the clinic manager, regretfully announced.
On hearing this, my hand immediately shot up, and like an overexcited child I waved it vigorously in the air: “Choose me, choose me!”
For this was my once-in-a-lifetime-chance to see what a cleft surgery similar to the ones I went through as an infant was really like, and I wouldn’t miss it for the world. Luckily, I didn’t have to.
As we waited for the doctors to prepare for the first operation, we got to meet the patients: a three-month-old boy having his first operation that morning; two toddlers whose lips had been repaired and were now awaiting palate surgery; and two seven-year-old boys just about to be discharged following bone graft procedures.
The baby was asleep, oblivious to our presence, but the other children glanced apprehensively at us. Who were we? And why had we come? It reminded me of a time when I was five or six-years-old and was called to attend a hospital conference. There, a room full of doctors examined my cleft repair, discussing what had been done and what could still be done to improve on my appearance. No one seemed to notice how frightened I was.
While we were getting to know the young patients, another baby arrived at the clinic, his operation being scheduled for the following day. He was wide awake and looked at us curiously.
I asked the nurse if I could hold him. She nodded and the moment I had him in my arms I fell helplessly in love with this beautiful, cheerful baby. Even with a cleft, he was nothing less than whole.
We’d been at the clinic for about an hour when Cecilia announced that the first operation was about to commence. The three of us who’d be viewing the procedure were ushered into a cramped dressing room to change into scrubs.
My heart was beating fast as I fumbled with the blue cotton garments handed to me. I was starting to sweat a little from the sudden rush of excitement and slight trepidation.
“If you think you’re going to faint in there, sit down on the floor,” Cecilia cheerfully advised. “We don’t want you falling over and hitting anything or anyone.”
With that we were shown into the operating theatre where Dr Asensio and his team were waiting.
The room was smaller than I had expected and to my great relief, it didn’t smell of ‘hospital’ the way I was used to. The atmosphere was relaxed and friendly, and Dr Asensio urged us to step closer to be able to see what they were doing and to ask questions throughout the operation.
The baby boy who only a short while ago had been asleep in his cot, blissfully unaware of what was awaiting him, now lay incubated on the narrow operating table and apart from his nose and mouth, his body was entirely covered in sterile green sheets.
The moment I saw him, a painful realisation hit me: once upon a time, it had been me on the operating table. I quickly brushed the thought away, adamant that I was neither going to faint nor have a breakdown.
The artist-like skills with which Dr Asensio carried out the lip repair was mind-blowing. I suppose I’d never really thought about the mechanics of cleft repairs – they stitch you up somehow – but this was something else.
Using a measuring tape and an instrument that resembled my ten-year-old daughter’s maths compass, Dr Asensio carefully measured the proportions of the baby’s face to make sure he got a result that was as balanced as possible. He then made small incisions in the baby’s lip, creating several flaps that he puzzled together with very fine stitches.
The result was beautiful and, to my eye, far superior to many cleft repairs I’ve seen, including my own.
It was only when the procedure was over, and the anaesthesiologist prepared to wake the baby, that I began to wobble.
“Is he in pain?” I asked worriedly as the baby coughed and jerked.
“Oh no,” the doctors assured me, but I couldn’t help thinking that the baby must be feeling some discomfort. For I know painfully well that waking up from anaesthesia can be an awful experience.
A few minutes later we followed the nurse holding the baby into the recovery room and watched as she tucked him into a bed amidst his increasingly vocal protests.
By now I couldn’t hold back the tears. Why won’t the nurse just cradle him, I thought to myself. Pick him up, please. He needs to be held.
Another nurse brought a bottle of honey water for the baby, but he still wouldn’t stop crying so finally the nurse picked him up. I heaved a sigh of relief.
If only the baby’s mum and dad could be with him now, I thought, he’d be a lot happier. But the clinic only allows parents to watch through a window post-op, to minimise the risk of infection.
I felt a twinge of guilt that I was allowed in the recovery room with the baby when his parents were not. So, when they appeared in the window, anxiously gazing at their son, I tried to give them an encouraging smile as to say, “all is good, your son is ok.”
It was hard leaving the clinic and the baby and even now as I’m back in London I think about him. I hope he’s doing well and that the operation wasn’t as traumatic for him as it was for me all those years ago.
The following morning, we boarded the minibus that would take us to a remote village 1.5 hours outside Antigua. There we would visit a Mayan family, several members of which had been treated for bilateral cleft lip and palate at the clinic in Antigua. Three doctors and a nurse from the clinic accompanied us on the long and winding journey through rural Guatemala.
On arrival to the village, we were greeted by a large group of children dressed up in their best clothes for the occasion. With them were two women who I believe were sisters, and whose children were now crowding around us.
Also present were the grandparents as well as the husband of one of the women. The grandmother had been born with bilateral cleft lip and palate and so had several of her grandchildren. Although cleft isn’t always genetic, in the case of this family it clearly was.
Two sisters in the family, Sandy, 9, and Evelyn, 6, were both born with bilateral cleft lip and palate. They also had two pits, or depressions, in their lower lip, as did their grandmother and younger cousin who’d also been born with cleft.
I asked the doctors about these pits, what were they? It was something I’d never seen before. I learned that these small indentations in the lower lip are a hereditary trait associated with bilateral clefts in particular.
I later looked it up and discovered that this condition is known as Van der Woude Syndrome and is caused by gene mutations. These lip pits often excrete saliva because they connect to the drainage of salivary glands beneath the skin. If that’s the case, they are usually surgically removed to avoid discomfort due to inflammation caused by bacterial infections or chronic saliva excretion.
Joe and Nancy, an American couple, had brought an enormous duffle bag filled with toys, pens, colouring books, hair accessories and more for the children and as Joe opened the bag and started handing out the gifts, the children and their mothers gathered around him, giggling happily.
I imagined my daughters being there and knew how excited they too would have been seeing the huge bag full of treasures.
Later, I sat down with Sandy and Evelyn. I pointed at the scar on my lip to show them that I too had been born with a cleft. The girls’ mother told me that Sandy no longer wanted to go to school because other children were teasing her for her looks.
It broke my heart hearing that, and I said to Sandy that I too was bullied at school, so I knew how she must be feeling, but that it was still important to go to school.
“You have two beautiful daughters,” I told the mother, and I wholeheartedly meant it. There was something about Sandy and Evelyn that made me fall in love with them; they had such lovely energy and perhaps they also reminded me of my daughters who are the same age as Sandy and Evelyn.
While our hosts were busy preparing a typical Guatemalan meal for us – tortilla bread, meat and black beans – two members of the Journey of Smiles group retrieved a long rope and invited the children to skip. But it wasn’t something they’d ever done before, and they looked confused at first when I excitedly jumped in to show them what to do.
They gazed at me with big eyes and must have thought I was a strange creature: a fully-grown woman jumping over a rope! But one after the other they joined me, holding my hands tightly as we skipped.
Later, when I told my younger daughter about this over the phone, she said with not a little reproach in their voice: “why have you never skipped with my sister and me?”
I silently pledged to get them a long skipping rope on my return to London.
When it was finally time for us to leave the village and head back to Antigua, I gave Sandy and Evelyn a hug and a kiss. Smiling, they hugged me back.
I didn’t want to leave them just yet, and I desperately wished that I’d been able to communicate with them in Spanish without a translator. There was so much more I wanted to say to them.
I hoped that Sandy would continue to go to school despite the bullies, and that she and her sister would grow to appreciate just how beautiful and innately whole they truly are.
And maybe one day, I’d get the chance to visit the village again, this time with my daughters, to see Sandy, Evelyn and their family once more.
When my first baby was born, I was lucky that I was able to breastfeed her though it wasn’t always plain sailing. New to motherhood I constantly worried that my daughter wasn’t gaining enough weight and I’d cry hysterically each time the health visitor weighed her.
In the end, I breastfed my daughter until she was well over a year old and when her younger sister was born a few years later, I was a lot more relaxed about feeding her. Then again, she weighed a whopping 4.95kg (10 pounds, 11oz) at birth so there really wasn’t any need to worry.
Feeding a baby born with a cleft presents a different kind of challenge: poor suck, air swallowing, milk entering the nose, long feeding times and fatigue can result in poor weight gain.
While most infants with an isolated cleft lip are able to suck adequately and can be breastfed, babies with a cleft palate have an air leak through the cleft, which prevents effective suction.
Born with a complete cleft lip and palate, I was fed formula milk with a spoon as a baby, but thankfully there’s been some advancement in feeding techniques for cleft babies since.
Special bottles designed for cleft babies have emerged, facilitating the feeding and enabling a mother to express milk and feed it to her baby in a bottle. That is, of course, if she has access to such bottles.
For thousands of Guatemalan mothers giving birth to a child with cleft, adequate information about how to feed their baby is lacking, let alone access to specialist feeding bottles. As a result, many cleft babies are too malnourished to be able to undergo cleft repair surgery.
Tessa de Goede de Ordoñez, a Dutch woman who’d settled in Guatemala, is the founder and director of Asociacion TESS Sin Limites, a non-profit organisation that provides nutrition programmes for poor, malnourished cleft patients. TESS Sin Limites has been a Smile Train partner since 2012, and a visit to the clinic was the last item on our itinerary.
Located on the outskirts of Antigua, the clinic was bustling with children and parents when we arrived just after 9 o’clock in the morning. I counted a handful of staff, including Tessa who was busy examining babies and giving instructions to parents before handing out containers with milk powder and nutritional supplements as well as specialist feeding bottles. In an upstairs room, a speech therapy session was in progress.
I’ve never seen so many cleft children in one place, and it was quite overwhelming. Some of the babies were still waiting to have their first operation; others were due to have their second or third operation as soon as they were strong enough to cope with surgery.
While carrying out her examinations and talking to parents, Tessa gave us an overview of each case, explaining that she asks to see patients every 2-4 weeks, depending on how malnourished they are.
For many families getting to the clinic involves a 2-3 hours’ long bus ride and TESS Sin Limites covers the cost of travel for patient and parents who could otherwise not afford to come to the clinic.
As I slowly made my way around the clinic, greeting children and their parents in my exceedingly limited Spanish, I spotted a little girl who stood out from the rest. She didn’t have a visible cleft, but she presented with obvious signs of Treacher Collins Syndrome, a condition that affects the development of bones and other tissues of the face.
Although symptoms vary, most people with Treacher Collins have underdeveloped facial bones and a very small jaw and chin. Some, like this girl, are also born with a cleft palate. Other symptoms include eyes that slant downward and absent, small or unusually formed ears.
I asked Tessa about the girl, and she confirmed that it was indeed Treacher Collins and that she came to the clinic to be treated for a cleft palate.
“What other medical care is available to her,” I wondered. “Will she receive any specialist treatment?”
Tessa shook her head sadly, saying there’s almost no care available to impoverished Guatemalan children with syndromes like Treacher Collins.
Later I came across a little boy with Pierre Robin Sequence, another condition that often includes, in addition to cleft palate, an underdeveloped lower jaw and chin and a tongue that falls back into the throat, which can cause breathing problems. He too is unlikely to receive any specialist treatment in Guatemala, save for the repair of his palate.
“Have you meet Pedro yet?” one of my Smile Train companions asked me.
“No, who’s Pedro?” I answered somewhat bewildered.
Pedro turned out to be a lovely young man who had his cleft repaired two years ago and now works as a chauffeur for TESS Sin Limites, ferrying patients from hard to reach areas to the clinic.
When Tessa and her team aren’t busy seeing patients at the clinic, they travel around Guatemala helping cleft-affected families who are unable to make the journey to the clinic.
Between 500 and 600 Guatemalan babies are born with a cleft lip and/or cleft palate each year, but since many parents believe that cleft is a punishment from God, they often hide their child from the community. This means that TESS Sin Limites literally have to go look for cleft-affected babies and children in need of treatment.
I left the clinic in full admiration of the work that Tessa and her team do and desperately wishing there were more people like them in the world.
Even though it’s been a long time now since my Journey of Smiles to Guatemala, I still think about the children I met there; Sandy and Evelyn, baby Juan whose operation I watched, the girl with Treacher Collins, the baby boy I cradled in my arms and with whom I fell head over heels in love. Their beautiful faces are forever etched in my mind and heart and I often wonder how their young lives have unfolded.
As excited as I was to visit Guatemala and observe first-hand the vital work Smile Train does there, I felt somewhat anxious in the week leading up to the trip.
How would I react when faced with a room full of cleft kids and infants, I wondered. Would I feel sorry for them? Would seeing them bring back painful memories from my childhood?
Would I cry? Break down?
If only I’d known just how much I’d treasure every moment I got to spend with the children at the surgical clinic, in the village where Sandy, Evelyn and their family live and at Tessa’s nutrition clinic and how I’d wish the journey wouldn’t end.
It’s true I did get teary eyed in the recovery room following Juan’s operation, but – and this might sound strange so hear me out – I never felt sorry for the children on account of their clefts. After all, I know from personal experience that being born with a cleft is no tragedy.
It wasn’t that I took solace in the knowledge that these children would have their clefts ‘fixed’ by skilled surgeons; no, the reason I didn’t feel sorry for them or pity them, was much more profound, for I was truly able to see and feel their wholeness.
By wholeness, I mean that intangible essence within us, which is what makes us fully human. It is an innate wholeness that is separate from the physical body and isn’t broken by a cleft or any other disfigurement.
We come into the world as perfectly imperfect human beings and children born with a cleft are no exception.
We are all born whole, but many of us become disconnected from our wholeness as a result of social conditioning, other people’s responses and our lack of awareness.
Although surgical intervention is essential for the long-term health and wellbeing of a cleft baby, focusing exclusively on how to ‘fix’ a physical anomaly such as a cleft, mustn’t get in the way of the deeper truth that this baby too was born whole.
So, never pity a child whose appearance doesn’t conform to what’s ‘normal’; beneath the surface, that child is no different from you.