The incomplete mouth
Antigua: The human face – that beautiful personification of character, expression and emotion – tends to interrupt any idea that we are just an animal, a bunch of cells arranged into a body. We take things at face value, we face the world with that highly individual arrangement of skin, eyes, mouth and nose. In many ways, we are our face.
Occasionally, something happens to disrupt that. Something like a cleft lip and palate. That hole bang in the middle of a child’s face is a reminder of our provenance, the origins we share with all other spined creatures: our symmetrical beginnings. We are formed, like all vertebrates, by the folding of the two halves of our body to make a whole. In cleft palate babies, the two sides of the complex mammalian facial structure do not quite fuse, leaving a gaping hole in those few square-inches all eyes are most drawn to: the face.
In the rich world, a cleft palate is usually a minor problem that can be rapidly remedied with surgery within months of birth. In the poor world, it is a far more serious problem.
We visit the Hermano Pedro hospital in Antigua, a charitable institute for sick children, run by donation. In a ward on the first floor, we find a pitiful array of cots, each home to a tiny baby, each with a hole in his or her face. These are the lucky ones, found by effortlessly cheerful Tessa, a capable Dutch woman who came to Guatemala as a volunteer seven years ago, and stayed. At the end of 2008, Tessa set up her own charity to help some of the country’s thousands of cleft palate children, none of whom get any assistance from the government.
Tessa drives around the local Mayan villages looking for cleft kids to help – last week she found 40, some aged as old as 12 years. She promotes the project using radio messages and posters, nevertheless, the stigma attached to having a baby with any obvious deformity is such that when she arrives in a community, parents often hide the infant from her. A spate of US adopters who came through Guatemala on children-stealing missions, some years ago, contributes to a general lack of trust.
Cleft lip and palate is a congenital defect, more common in these small rural communities where inbreeding is common. Malnutrition during pregnancy is also a huge risk factor. Many of these very poor women eat an unvaried diet that lacks vitamins, minerals and protein. Native Americans have the world’s highest prevalence of cleft lip and palate.
The babies we see, lying listlessly in their hospital cots, are all tiny for their age. It is impossible for many cleft palate babies to breastfeed: even if their mouths can close around the nipple, their tongues – used by all mammals to swallow – simply push the milk up through the hole in the palate, where it pours out of their noses. We see a four-year-old the size of a 2-month-old European baby. Mothers that cannot breastfeed try alternatives. One child, Thelma, was somehow surviving on a diet of water and coffee, when Tessa found her.
In order to be operated on, the babies must be a minimum weight (10lbs) and attain a minimum haemoglobin count. For all, this means a lengthy hospital stay, while they gain the weight through nose-tube feeding. Tessa pays the parents’ bus fares to visit their kids every 8 days, but with many families having 10-14 kids, time and money are in short supply. Parents seldom visit.
Tessa raises the 1,500 quetzales (US$200 or £125) for the cleft lip surgery entirely through donations. Fixing the lip – a 1-2-hour operation – is first, and then a year later, the palate surgery (2-4 hours) can be done for the same price. Surgeons from Europe and Canada visit occasionally to offer their services for free, or they are carried out by the one Guatemalan surgeon who has been specially trained.
The results are extraordinary. Once the child’s lip is fixed, eating and drinking are immediately easier, infections plummet once the hole to the outside is sealed, speech becomes easier and, because the scar is quick to heal, parents are less ashamed/protective over the child, so social integration is possible.
Ten-months-old Diego had his lip fixed in November and his family are all smiles. He’s still on Tessa’s nutrition programme (he spent 8 months here in the ward, prior to his lip op, to fatten up), but after he’s had his palate surgery this autumn, he won’t need any more special care. The palate surgery is utterly transformative, it turns an obviously disabled child with a poor chance of survival into a completely ordinary person.
In the vast cloud of poverty that blankets the developing world with an overwhelming shadow of despair, it is rare indeed to find such a simple procedure that can genuinely transform lives. Tessa battles to find the money (donate here), to convince parents to let their child be operated on (only half agree) and to prepare the children physically for surgery. In her first year (2009), of the 25 kids who had the lip operation, 11 died from malnutrition before they could have palate surgery. Last year, she introduced the nutrition project and all the kids survived through.
This year, Tessa is introducing a speech therapy programme for older children who receive the surgery and never learnt to talk properly. And she is starting a dental project too. Older cleft kids have black and infected teeth because of the hole. Often, palate surgery fails – the palate reopens – because of infection, and so Tessa is hoping to get all their teeth problems sorted before palate surgery.
So far, more than 100 kids have been helped by Tessa’s charity, and happy parents spread the word, so that more parents come forward. “We’re really starting to get somewhere,” Tessa smiles.