I’m terrified my son will be bullied for the same reason I was

It had barely crossed my mind that my son could be born with a similar condition (Picture: Stacey Hussell)

‘I think you’re right,’ said the sonographer, carefully. ‘I think there is a cleft.’

I was pregnant with my son, Dylan, and my husband and I were at our 20-week scan in October 2021.

While I was born with a unilateral cleft lip and palate – a gap in the upper lip, base of the nose, gum and palate on one side of my mouth – it had barely crossed my mind that my son could be born with a similar condition.

It had been a huge worry when I was pregnant with my daughter four years earlier; but she was absolutely fine, so I had assumed my son would be too.

I was born with a unilateral cleft lip and palate (Picture: Stacey Hussell)

When the doctors confirmed it, though, the fears started flooding in: I worried about the surgeries he’d need, but also about the bullying he could be exposed to.

At school, I was viciously mocked for having a cleft lip and palate.

I couldn’t bear the idea of Dylan going through what I went through. I wouldn’t wish it on my worst enemy.

As a young child, I was happy and confident. It was only towards the end of primary that people started to make comments about my mouth and nose.

Secondary school was pure hell. It was awful, all the way through. 

Despite being shocked at the news that Dylan would have a cleft, we didn’t have much time to dwell on it (Picture: Stacey Hussell)

Kids would say, ‘You look like a bulldog’ because I had a massive underbite, and they’d imitate my appearance with actions and hand gestures

Growing up, I never thought I’d have a boyfriend. I just assumed I wasn’t pretty enough.

I gained a bit of confidence in my twenties, but it was only when I met my husband on a dating app in 2014 that I started to feel more comfortable with my appearance.

Even then, though, I still didn’t truly believe I was good enough. The first time I genuinely felt pretty was on my wedding day.

Despite being shocked at the news that Dylan would have a cleft, we didn’t have much time to dwell on it. The day after that 20-week scan, we were told that he would also be born with just one kidney.

Doctors suggested that, because of these two anomalies, Dylan could be born with one of several very serious syndromes – and they started strongly encouraging us to consider terminating the pregnancy; but there was no way we wanted to consider that.

My husband and I started to Google the possible syndromes doctors were worried about and we were terrified by what we found.

But as it turned out, Dylan was fine. He wasn’t born with any conditions, and he does have two kidneys; it’s just that they’re both on the same side.

Dylan had a bilateral cleft lip and palate – meaning it affects both sides of his mouth, lips and nose – but when I first saw him, that didn’t even enter my head. I just thought: ‘Oh my God, he’s beautiful’. 

He’s had three surgeries so far – two on his lip and one on his palate (Picture: Stacey Hussell)

It wasn’t long before the fear started creeping in, though. I knew Dylan would need multiple surgeries; it’s common practice with clefts, because there can be issues with breathing and feeding and, later, with speech.

He had to have the part of his lip that stuck out taped down to make it more pliable for surgery; and he’s had three surgeries so far – two on his lip and one on his palate.

He’ll need a lot more surgery throughout his life. I think his next one will be when he’s around six, when he’ll need a bone graft. They’ll take bone out of his hip and put it up in his gum, because he has two gaps where they will need to move teeth.

Of course the surgery is a worry – handing him over to the surgeons and seeing him be put to sleep is scary, and it’s horrible seeing him so upset and swollen afterwards – but I worry about the potential bullying, too.

My biggest fear of all for Dylan is social media; I worry endlessly about him being bullied online (Picture: Kate Murrell Photography/ HAMILTON STUDIOS)

There is still a lot of stigma around visible differences. Even in kids’ TV programmes, the villain – or the person to be scared of – often has scars on their face.

And children are cruel. When you’ve got something like a cleft lip and palate, it’s just out there for the world to see. There’s no hiding it.

My biggest fear of all for Dylan is social media; I worry endlessly about him being bullied online.

But I’ve vowed to fill him with so much confidence that he can just brush off any nasty comments. We talk to him about differences and give him positive affirmations: ‘You are strong’; ‘you are brave’; ‘you are handsome’; ‘you are clever’. He is also having speech therapy to help him with his pronunciation of some letters and words.

I’ll never stop raising awareness and encouraging education about visible differences; for the sake of my son, and for all the other children (Picture: Stacey Hussell)

He’s a very happy little boy at the moment; although in the last few weeks, he’s started seeing photos of himself as a baby and saying things like, ‘I don’t like my nose, I’ve got a silly nose’.

It breaks my heart when I hear him say this.

But I just say, ‘you were born with a special smile.’ He doesn’t really say anything, but I can see him processing what I’ve said.

I hope my husband and I can help him continue to have this open, honest relationship with us so that if he is bullied at school, he knows he can come to us about it.

And I’ll never stop raising awareness and encouraging education about visible differences; for the sake of my son, and for all the other children who feel they need to hide their faces or shrink themselves at school.

No child should ever be bullied into thinking they’re not good enough.

As told to Izzie Price

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