Dad finds out vital information about cleft with CLAPA
When Matt and his wife Katie were told their second child would be born with a cleft lip they were overwhelmed, and turned to CLAPA for much-needed information about the often misunderstood condition.
“At the 20-week scan they told us Chester’s gender, and then said we needed to see the NHS team regarding a cleft. We were so excited to find out we had a boy, and that news just took the shine off everything.
“It hit us really hard and was such a nerve-wracking time. We were terrified, especially as they said cleft could be linked to more serious conditions. They explain things to you but it’s still overwhelming.
“We didn’t really know what to expect, and needed to educate ourselves fast.”
“We didn’t really know what to expect, and needed to educate ourselves fast.”
Matt said the hospital quickly recommended CLAPA, and directed the couple to our website.
“We leant on CLAPA so much in those early days, as we were so scared throughout the pregnancy.
“We were constantly scrolling through the CLAPA website to see how babies with cleft look, how they feed, what happens during and after the operations, and how the babies recover. It was all new to us, we were trying to see what we were in for.
“It was such a relief to read CLAPA’s information – it really helped us accept Chester’s cleft and understand we weren’t alone.”
“It was such a relief to read CLAPA’s information – it really helped us accept Chester’s cleft and understand we weren’t alone.”
Chester was born two years ago with a unilateral cleft lip and palate.
Matt was so impressed with the help he received from CLAPA that he ran for us at the Colchester Half Marathon this year, raising £1100 – to help other families going through similar experiences “and not knowing what to expect”.
Matt said he was aware of cleft before Chester’s diagnosis, but had no idea how common and complex the condition can be.
“Everyone seems to knows someone who’s had a cleft. I’ve got a friend in his 40s who was born with one, but I never thought to ask him about anything until Chester. I think unless it’s on your doorstep you really don’t think to ask about it.
“I think it’s a very misunderstood condition – people think the cleft just gets repaired with a small operation, and then everything’s hunky dory.”
“I think it’s a very misunderstood condition – people think the cleft just gets repaired with a small operation, and then everything’s hunky dory. But it’s the things that come with it – the feeding problems, speech, hearing, intense psychological impact on families, and fear of your child being picked on at school for looking different. Nobody thinks about the things it entails unless they’re suddenly living with the reality.”
Chester is now babbling, but is having difficulty pronouncing letters formed in the back of his palate, such as the letter ‘d’. Matt said he’s getting used to being called ‘addy’, instead of daddy. Chester’s also suffering with constant ear infections, similar to a lot of babies born with a cleft.
“It’s a big old journey. And until you deal with it yourself, you don’t know what’s involved.
“CLAPA does a brilliant job of raising awareness of cleft and all its difficulties. I often get asked by people about the operations, and they don’t understand things like gum bones missing affecting the teeth.
“There’s a lot I still don’t know, but, step by step, I’m coming to understand it.”
“There’s a lot I still don’t know, but, step by step, I’m coming to understand it.”
To help Chester’s big sister Maisie, aged five, understand his cleft, Matt and Katie shared CLAPA’s book Callie and her Cleft with her, which illustrates a baby’s cleft journey.
“Maisie was very shocked with the big change of her baby brother after that first lip repair operation, but reading the Callie book, with children’s illustrations, helped her understand what was happening.”
Matt said he regularly checks the CLAPA website and social media channels, checking in with the next steps and seeking reassurance about Chester’s cleft journey.
“It’s so lovely to see all these smiling faces at different stages of their journeys, even though we know how hard each bit can be.
“It was great to see the story of the little boy with a cleft on the big nappy advert. It’s brilliant getting things out like that, because people start to recognise cleft more. More of that would be great to raise awareness.
“Everyone thinks their children are beautiful, but I find Chester stunning. He’s almost been compensated for his cleft with lovely blue eyes and blonde hair. And I just think ‘fly my boy, you’ve got nothing wrong with you’.”
Thank you Matt
Thank you to Matt for sharing his story.
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