Kate was “devastated” when she was told her son Harry would be born with a cleft lip at her 20-week scan, just after getting married.
“The news was a bolt out of the blue. We found out the week after our wedding, and that was the end of our honeymoon phase.
“I’d never really heard of cleft lip or palate. I knew Joaquin Phoenix had a cleft lip, but that was about it.”
I called living with cleft ‘being in a bubble’.
After being signposted to CLAPA by their NHS cleft nurse, Kate and her husband Adrian accessed information from our website and joined CLAPA’s Facebook groups.
“I had to take time to get my head around it at first. I called living with cleft ‘being in a bubble’. You think you’re the only one in the world when you get that diagnosis.” 
Things changed when they attended a CLAPA online antenatal support group.
“It was amazing – throughout the hour people were saying the same thoughts and the same fears as I had. And it was so reassuring to think I’m not a bad mum, and my thoughts aren’t wrong.
“It was a light bulb moment. I thought ‘I’m not going crazy. I’m not doing anything wrong’. I’m so glad we went to it. I’m so glad I didn’t keep my head buried in the sand.”
Unfortunately, they only made it to one antenatal group as Harry was born prematurely at 34 weeks, with a unilateral cleft lip.
After Harry’s birth, Kate used the CLAPA feeding bottle service, and joined online parent support groups, including Makaton signing for babies.
“All the CLAPA groups were brilliant, the services they provided were invaluable, and they were a great opportunity to socialise with other cleft parents.”
Without the support of the CLAPA community, I probably wouldn’t have got through the last three years since Harry was born.
Kate also accessed CLAPA’s counselling service following her son’s cleft repair surgery.
“The counselling sessions really put things in place, and helped me own my feelings. It took me about two weeks to get used to Harry’s forever smile, but it took me a lot longer to stop grieving for his birth smile – and the counsellor was a very big part in helping me through that difficult time.”
CLAPA’s Facebook group was also a “huge help” for Kate during Harry’s cleft repair surgery.
“Without the support of the CLAPA community, I probably wouldn’t have got through the last three years since Harry was born.
“CLAPA has helped all of us. My mum’s joined the online grandparent’s group and, when trying to break the news to my teenage daughter, we downloaded CLAPA’s ‘Callie and her Cleft’ book to help explain it to her.”
Kate valued the support she received from CLAPA so much she became a volunteer, and now supports our online antenatal support groups; meets up with local fundraisers; talks about her cleft journey to medical professionals; and sits on CLAPA staff and trustee interview panels.
“I just wanted to give back to the people who’d spent time reassuring me, giving me their advice, giving me their experience, and who were just there. They didn’t know me; they didn’t have to do that.
“I see parents at the end of the online support groups with a little less worry in their eyes, just like me that first time I joined the antenatal group.
“Every chance I get, I shout about cleft and CLAPA. My life wouldn’t be what it is if it wasn’t for CLAPA.
“I feel passionate about the cleft world and, as a parent who’s been through it, I can say to others ‘it will be okay, CLAPA can help support you’.”