“Everyone is different in a way and my cleft is my difference”

The active seven-year-old, who lives in Howley, loves school, has countless badges on his Beavers uniform and goes litter picking in his spare time.

He is also a fantastic big brother to his little sister Carla.

Cooper has faced more than his fair share of challenges in his short life after being born with a cleft lip and palate in July 2016.

Cooper had his first operation at 15 weeks

One in 700 babies in the UK are born with a cleft lip and/or palate - that’s more than 1,200 babies each year.

This week is Cleft Lip and Palate Awareness week – running until May 12 – and Cooper’s mum Hannah wants to share her son’s experiences in the hope of righting some common misconceptions around clefts and preventing some of the painful conversations she and her husband Jonathan have had in the past taking place with other families.

The couple found out that their baby had a cleft when Hannah had her 20-week scan.

Hannah and Jonathan were told their baby had a cleft at their 20-week scan

Hannah, who is 35, said: “We had no family history of cleft lip or palate, so it was a big shock when we found out.

“Around 10 per cent of babies born with cleft lip and palate also have associated syndromes but the scan could only show a limited image of what was involved in Cooper’s cleft.

“For the rest of the pregnancy we had to wait until he was born to see exactly what was in store for us.

“We knew that whatever happened our little boy would be very loved.

“Alder Hey Children’s Hospital assigned us a cleft nurse who was incredible and was on call for support and questions from diagnosis right through to when we felt we no longer needed her.

“Cooped was born with a complete unilateral cleft lip and palate, which means only one side of his face is affected.

“His cleft went from his lip all the way to his soft palate – the spongy part you can feel when you put your tongue to the back of your mouth.

“It has never stopped him doing anything, although it’s added some adventures and challenges along the way.

“Today he’s a clever, kind and funny little boy and I’m so proud of him and the person he’s growing up to be.

“He is doing so well at school, his Beavers uniform is full of badges and he’s such a good big brother.”

Cooper was born with a cleft in July 2016

When Cooper was born, Hannah says “he was absolutely perfect” but had some feeding problems initially and stayed in neonatal for around ten days.

The family’s cleft nurse was with them every step of the way.

Cooper was just 15 weeks old when he had his first operation to repair his lip, nostril and hard palate - the front part of the roof of his mouth.

Cooper has had two operations and will need another in the next few years

Hannah said: “I was so scared!

“This tiny boy was taken out of my arms and I had to put every ounce of faith and trust into the surgeons and medical team.

“I had no idea how he would cope with the anaesthetic and what his face would look like when he returned.

“Cooper has had two operations so far with a least one more needed in the next few years.

“On top of his surgeries, he's had regular reviews at Alder Hey as he grows - extra dental appointments, audiology appointments and speech and language intervention.”

Hannah added: “As Cooper grew, I would take him to baby groups and on walks and people would comment on his cleft saying what a shame it was and asking when his surgery was.

“I enjoyed those interactions with strangers because it was a chance to inform them about clefts.

“So many people said to me that their brother or friend was born with a cleft and I realised how common clefts were.

“I also realised how far cleft surgery and knowledge has come.”

Cooper spends his free time litter picking around Howley

Cleft Lip and Palate Awareness Week takes place in May every year and provides the perfect opportunity for families to share stories and inform people about clefts, while raising money for cleft charities and local hospitals.

CLAPA – the Cleft Lip and Palate Association – is a national charity which supports people affected by cleft in a non-medical capacity.

It provides information from diagnosis through to support for adults who were born with clefts.

CLAPA has been integral in the Austin family’s cleft journey.

Hannah said: “One in 700 babies in the UK are born with a cleft lip and/or palate - that’s more than 1,200 babies each year.

“There are so many different types of cleft and one of the biggest misconceptions is that once a child has surgery the cleft is ‘fixed’.

“That couldn’t be further from the truth.

“A cleft can affect a person in so many ways including breathing, feeding, speech, hearing, dental problems and so on.

“For me, Cleft Awareness Week is about celebrating our achievements as a community and empowering those with clefts to share their story and tackle those misconceptions.

“When Cooper was born, they provided us with a family pack, which included specialist bottles so we could feed him.

“Most cleft babies cannot create enough suction to suck a bottle ,so we had to squeeze the soft bottle to feed him.

“They paid for us to have a specialist bonding scan so we could see his cleft before he was born and they provided social events where we met several families who have been our absolute rock for advice and support.

“They also provide information and training and online support groups for parents as well as one-to-one peer support, a young people’s council and away days.”

Hannah and Jonathan have always been open with Cooper about his cleft and together, as a family, over the past seven years, they have helped with fundraising for CLAPA.

They’ve completed sponsored walks and collected a mile of pennies as well as supported family and friends who have fundraised too.

This year, Hannah is using her business – HanMade for Kids – to boost the fundraising totals.

Cooper is a happy active seven-year-old

Hannah said: “I run a small personalising business, which I use to create cleft positive items - everything from ‘forever smile’ surgery vests to ’smileaversary’ banners, bracelets, teddy bears with a cleft to match the child and keyrings.

“Over the past few weeks, I’ve been donating a percentage of the price of my cleft items sold and over the coming week I’ll be sharing loads of facts about clefts as well as our personal story.

“It’s hugely important to raise awareness of clefts.

“On the whole Cooper has had a positive response to his cleft and he embraces it.

“However, there are still huge misconceptions and outdated language used around clefts. “I’ve had some really painful experiences that have come from complete lack of awareness and if I can stop this happening to just one family then I’ve made a difference.

“As Cooper grows, I do have a concern that he may be bullied because of his cleft and we check in with him regularly to see how he feels.

“In the cleft community we have a saying ‘every smile tells a story’ and wow, what a story!

“We have made so many lifelong friends within the cleft community and, while I’m not saying it’s always been easy, I wouldn’t change a single second.”

When Hannah told Cooper that she was sharing his story with us at the Warrington Guardian, the youngster wanted to add his own thoughts about his cleft.

Cooper said: “Everyone is different in a way and my cleft is my difference.

“It’s ok to have a cleft and I like my scar – it’s cool!”

The Austin family have spent years fundraising for CLAPA - the Cleft Lip and Palate Association