A parent’s experience of a late cleft palate diagnosis

September 3, 2020

Adapting to the unique challenges of having a baby with a cleft palate can be stressful for any parent or carer.

But how does it feel to cope with these challenges if they can’t be explained?

These days, most cleft palates are spotted within 48 hours of birth, so families can get the specialist support they need right away. But far too many families have to wait weeks or even months until they have answers.

For Mandy, getting a diagnosis for her son took five years.

We interviewed Mandy to find out which signs were missed by health professionals over the years, how the late diagnosis affected her and her son, and what she thinks those working in the healthcare field can do to ensure this doesn’t happen to other families.

Mandy’s Story

After experiencing what she describes as a ‘trouble-free’ pregnancy, the first sign Mandy had that something was wrong was when her son, Aaron, struggled to breastfeed. From then on, he had issues with his feeding, breathing and speech. Despite check-ups from health visitors and visits to the doctor and dentist throughout the first 5 years of his life, no one saw that Aaron had a cleft palate.

Without the appropriate information, tools and support she needed to address these cleft-related challenges, Mandy had to adapt. This had a profound impact on how she felt as a parent. She said, “It was a lot of adapting with the tools that I had, really, and just trying my best as a parent. In hindsight, I can look back at that now, but at the time it feeds in to your feeling of not being good enough and there’s something that you’re doing that’s wrong, and you’ve asked the professionals and they didn’t see any issue so it must be me.”

‘…at the time it feeds in to your feeling of not being good enough and there’s something that you’re doing that’s wrong and you’ve asked the professionals and they didn’t see any issue so it must be me.’

When Aaron’s speech difficulties at school were noticed by his teacher, Mandy took her son to the doctors and got a referral to see an ENT (ear, nose and throat) specialist. It was here that his cleft palate was finally discovered.

After grappling with the intial shock at receiving a diagnosis for a condition she had never come across before, Mandy then had to deal with an overwhelming range of emotions – grief, loss, guilt, frustration – while coping with a whirlwind 6 months of appointments, surgery and speech therapy. 

She stresses that coming to terms with Aaron’s diagnosis took her over two years, and the impact of his delayed diagnosis still affects her today. She explained, “I think sometimes professionals forget that it can take a long time to really let that sink in and come to terms with, it doesn’t just happen overnight.”

‘I think sometimes professionals forget that it can take a long time to really let that sink in and come to terms with, it doesn’t just happen overnight.’

She became involved with CLAPA to raise awareness back in 2015 and found the process of talking about her experience to be therapeutic and healing. In this new interview, we asked her what she’d like health professionals to take back into their working practice. She emphasised the importance of listening to parents’ concerns, of practicing with empathy, and of ‘double checking’ babies’ mouths.

You can watch Mandy’s full 27 minute interview below [includes subtitles]. We’d like to stress that this video reflects Mandy’s personal experiences and story, and recognise that her journey may be different to that of other cleft-affected parents/carers. 

If reading, watching or listening to Mandy’s story has brought up emotions for you and you’d like to talk to someone else who will relate to what you’re going through, our Parent Support Service is here for you. Just click here to find out more and to be put in touch with one of our wonderful volunteers.

All our thanks go to Mandy for raising awareness and sharing her story so openly during this interview.

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