Some stories from our patients outlining their experiences of cleft lip and palate.

Euan

With little to no awareness about cleft palates, Euan’s mum and dad were completely taken aback when their baby was diagnosed with a unilateral cleft lip and palate in utero. Pregnant with baby number three, mum had no concerns before attending her routine 20 week scan but quickly realised that her new baby was going to be a bit different to her other two. “To be honest, we had no idea what a cleft lip and palate was,” says mum. “After the initial scan we went home and probably didn’t do the right thing and looked it up on the internet. It wasn’t a good thing to do because there is so much information and so many pictures in varying degrees that it was all a bit overwhelming.”

Euan’s mum had the chance to discuss all her concerns, long before his arrival, with her assigned specialist nurse. “They were always on the phone; if you had any problems or issues you could just call,” explains mum. “By the time he arrived we were very relaxed about it all.”

Euan was born on the 27th of July 2007 at nearly 11 pounds. “He was a huge baby,” says mum. “People were more amazed at how big he was than anything else and when it came time for his first surgery at 3 months old, part of me didn’t want it to happen. We had got used to his little face and loved that when he smiled, because his hole was so big, it was as if his whole face smiled.”

“My biggest concern before Euan was born was whether or not I would be able to feed him myself, as I had fed my other two and they say it is really tough to feed with a cleft,” explains mum. Most babies with a cleft aren’t able to create the necessary vacuum needed to suck because of the gap in their lip and/or palate, so feeding from a regular bottle or a breast is almost impossible. It’s like trying to drink through a straw that’s full of holes. “It was hard work but we managed and I was able to feed Euan for four months!” says mum, who expressed her milk and used specialist bottles.

Every child with a cleft palate is then assessed by a speech and language therapist. “We saw a therapist around every four to five months – she was very good and also managed to pick up on another speech disorder that was totally unrelated to Euan’s cleft,” says mum. In addition to speech and language, each child is also seen on a regular basis by an audiologist, paediatric dentist, orthodontist and psychologist.

Euan had surgery to lengthen his palate to improve his speech and also an operation to close the gap in his gum using some bone taken from his hip. “The kids at school asked questions when I had an operation on my hip because they wanted to see the scar,” explained Euan. “I was a bit upset as the scar was really small and I was hoping for a great, big, massive one!”

Today Euan is a confident 10 year old who has a keen interest in space, in particular black holes, and aspires to be an astronaut one day. According to Euan, he does not get asked much about his appearance anymore, however, he did have to explain it to most of his schoolmates. “Some had heard of a cleft before but not everyone,” explains mum. “I think that is something we have learnt from, raising awareness is so important and would be hugely beneficial. There is a lot more information and awareness today than there was 10 years ago but it would be great if everyone just knew what a cleft was and what it was like.”

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