Sometimes someone says something and it hits with such impact that hours, days, years later the phrase still swirls around in your head. “The doctors told us we shouldn’t get too attached to our baby. They said he was essentially a potato – a potato that had been badly cooked. Imagine a defect at the factory, your baby is a faulty product.”
I will forever have that phrase etched on my brain, and the mother’s look as she uttered it, cuddling little Danilo in one arm and holding hands with her husband in the other. Danilo is Guatemalan and is 9 months old. He was born with microcephaly, thanks to a mosquito bite. Danilo smiles, he likes having his feet tickled, he loves it when his 3 older brothers smother him in kisses whilst singing the shark song. He’s like any other child. He has the same right to learn, to play, to develop as his three brothers, and it pains me that doctors were prepared to forfeit his rights because they saw a condition and forgot there was a human. Yes, Danilo has developmental delays. Yes, his brain is smaller than it should be. Yes, he may not run marathons like his grandmother – but he is still a little boy, with a name, a personality, and a lot of love to give.
It’s been the most amazing couple of days. There are moments of intense privilege when the name UNICEF opens doors and you find yourself spending three days living and breathing with families who have been affected by Zika. Cup of coffee in hand, they confide in you about their low moments – they laugh, they cry, they share their lives. Across Latin America and the Caribbean, we’re promoting the rights of children under three, especially those with a disability: “1000 days of love.” It’s every child’s right. The first 1000 days are pivotal, that’s when development, regardless of condition, is most rapid. What I’ve come to realise is that the physical or mental capability of a child is only a tiny fraction of what causes disability. What really causes disability is exclusion, is discrimination, is putting up barriers to the child’s development: it’s telling you your child is a badly-cooked potato. What these children need, more than anything else, is to be stimulated from the word “go”: to play, to be part of the family, to be included. These actions allow them to realise their right to develop to their full potential.
My privilege hasn’t stopped with meeting baby Danilo. I’ve spent time over the last few days with his little friends Denise, Thiago, Angelito and Josep – all babies with microcephaly, all babies with infectious smiles and marvelous families determined to raise them just like their other children: with love, attention, and care. They are also babies with amazing family networks – loving parents and siblings, as well as aunts, uncles, grandparents, friends, neighbours, etc. who provide support to each other. The parents have formed a group to share experiences and this afternoon we held a little party. It was like any other children’s party – Danilo’s brother Dorian ate so much cake he was sick (literally), Denise’s sister Emma got over-excited and cried, mums chatted, babies were passed around. There was cake. There was laughter. There were love and friendship. Everyone was included.
Two weeks ago I was in Belize, again sat in the house of a family with a two-year-old child with cerebral palsy. The little child sat rigid, fists tight, tense and with arms outstretched. As his mum talked, she was stroking his arms and legs with a soft brush. You could see the little boy relax, as his little fist uncurled and his mouth broke into a smile. “Simple things,” she said. “He likes the noise the fork makes when it hits the side of the pan when I’m cooking, so I now do my best to make lots of noise.” That’s how he learns. That’s how he grows.
The story is repeated elsewhere. Last week I was in the Peruvian Amazon, talking to families who have children with hydrocephaly, Down Syndrome, and other congenital disorders. They talked about what they loved most about their children. Breastfeeding, singing songs, watching their children play together, bath time, nap time, the moment you return from work and your child realises you’re there. The same things they love most about their other children. But when I asked if they’d feel happy to tell their story, there was a moment of hesitation. “Some people laugh, some people point and stare,” they said. “But,” I asked, “if 1000 people were telling their story, would you like to then?” – “We’d love to” is the resounding response, this shows that when people are included, when they feel part of something bigger, they are empowered, and are able to do the best for their child.
For me, this has been an incredible couple of days spent with the most wonderfully badly cooked potatoes, and one I suspect I will cherish for a long time to come.
UNICEF is supporting families affected by Zika and other congenital disorders across Latin America and the Caribbean. In Guatemala specifically, it is working with Ministry of Health to reinforce health systems so they are able to provide adequate support to families, with an emphasis on ensuring all children and their families, including those in early years with a disability are included, receive early intervention and stimulation, and are able to realise their right to develop to their full potential.
Victoria Maskell is a Communication Officer for the ZIKA team for Latin America and the Caribbean