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

Freya

“Just because it’s not obvious doesn’t mean it’s not there”. This is the case for Freya, now 6 years old and born in the middle of “Cleft lip and palate awareness week”. Freya was born with an isolated cleft palate, which was undiagnosed until she was 10 days old. The family were discharged as usual and asked to return to hospital for a regular check-up after 10 days. At this point Freya’s mum still had concerns with Freya’s feeding, and when she discussed this with a senior midwife the diagnosis of cleft palate was made. "When you think of cleft, you have a specific image, and that isn’t always the case. I think that’s why a lot of isolated cleft palates get missed."

For a lot of expecting or new parents, the news that your child is going to have a cleft can be a surprise. “It’s horrible because you just don’t know why. I blamed myself because I thought I ate too many cream crackers! You just don’t know especially as there was no family history, it was something completely out of the blue”. Cleft care starts as soon as the diagnosis is made, which can be at a scan or after birth. A specialist cleft nurse will make contact within 24 hours. “As soon as we were under the cleft team it went from horrendous to OK. They know completely what they’re talking about, they know everything. It’s great”.

Freya underwent an operation to close her palate at 7 months old. Grommets were also inserted to help with her hearing. “The Operation was very scary” says Mum, but Freya recovered quickly. The operation was 2 weeks before Christmas “I’ve got a picture of her holding a Christmas cracker and sucking on a chocolate biscuit. It was her first taste of chocolate!” Freya is very resilient for such a young girl. "You have a child who is this tiny little thing and my one overwhelming feeling afterwards was her resilience. It’s you as a parent that struggles more than the child, which is something to reassure other people"

Cleft care can extend in to adulthood. The cleft team keep in regular contact with all patients during their care pathway, who are seen at a variety of clinics throughout the East of England. “The first appointment was quite nerve-wracking. It was intimidating because I remember being told that there will be a couple of people in the room and I walked in and counted 9 different people, so that was a little bit nerve-wracking!”. Cleft palate care involves a multi-disciplinary team, including, but not limited to, surgeons, specialist nurses, speech and language therapists, dentists, orthodontists, audiologists and psychologists. "My advice would be to write down any questions you have beforehand and just stick to these questions. Everyone is so friendly and they always put you at ease"

After surgery, following the advice of the cleft specialist speech and language therapist, Freya’s mum started to teach her to stick her tongue out and blow raspberries. Most children’s speech develops well after surgery but sometimes they can need extra help. Freya has had regular speech and language therapy at a local centre from a young age. “The main thing with Freya is her hearing, so she has a lot of audiology appointments and hearing tests”. Freya seems to take this in her stride. “As long as there are toys she’s fine! Toys and cake afterwards at the cafe!” Freya’s speech has blossomed and she’s now clear, intelligible and easy to understand. Looking back her mother says “You do think, will my child ever speak, and 6 years later, you’re saying ‘Be quiet! Stop talking!’”

Freya is in Year 2 at school and is doing really well. She likes writing and reading stories with her mum. She has lots of friends, with whom she “defeats the baddies!” in their playground games.

As Freya’s mum says, “You’ll go through every range and spectrum of emotion, you’ll go through the guilt, but you know what? I suppose it just makes you love them even more, if that’s possible!”

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