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.
Eight years ago, Tessa de Goede de Ordoñez, a Dutch woman who’d settled in Guatemala, founded 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 hour 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.
“What can I do to help,” I asked myself, mindful of the two children I’d met at the clinic whose medical needs went far beyond cleft care.
At that moment I felt utterly useless.
Since returning from Guatemala, I’ve set up a Just Giving page, raising funds for Smile Train.
Please consider making a donation, so that yet another child can receive a smile this Christmas.
Well done. Jenny. You are doing such great work.