Born Whole

Exhausted from the emotional intensity of the visit to the clinic and from watching an infant’s surgery, I returned to the hotel with the group for a quick respite. Next item on the agenda was something altogether different: we were climbing Pacaya volcano, one of the many volcanoes scattered throughout Guatemala, and which is still active.

When I first heard we were doing an afternoon tour of a volcano, I imagined a semi-leisurely stroll along a winding pathway up the volcano. How wrong I was! It turned out to be a steep hike upwards, aided only by a stick I’d bought from a village kid for $1.

It took us about an hour to reach the top of the volcano. By then it was getting dark, and I was cold, sweaty, shattered and euphoric to have made it to the top.

I picked a lava stone from the ground to give to my younger daughter who is obsessed with volcanoes, earthquakes and other natural phenomena and demanded proof that her mother had truly climbed a volcano.

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.

The warm and generous welcome we received from the family was humbling, and I think we were all very moved by the occasion.

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 hope Sandy continues to go to school despite the bullies, and that she and her sister will grow to appreciate just how beautiful and innately whole they truly are.

And maybe one day, I’ll get the chance to visit the village again, this time with my daughters, to see Sandy, Evelyn and their family once more.