Around one in every 700 babies are born with a cleft lip and/or palette and now a new support group in the north west is gearing up for its first major fundraising event, Journal reporter DAVID WILSON found out more......
When Laura O’Neill leads the north west’s Happy Faces group on their sponsored walk around Derry’s three bridges later this month, she knows the money raised will go to a worthy cause.
Laura’s oldest child Scott - now aged four - is one of the 200,000 Irish children born each year with a cleft lip and cleft palette - caused by the incomplete development of the top lip and palette during the early weeks of pregnancy.
“I was diagnosed at the 21 week scan and they were able to tell us it was a bilateral cleft lip but they weren’t sure at this stage about the palette,” Laura told the ‘Journal.’
“I was absolutely heart broken but had no idea what all this meant.”
Straight away Laura went home and started Googling to learn more.
She says her initial thoughts of ‘things could be worse’ quickly gave way to anxiety.
“I got anxious about what was ahead for us and our poor baby, anxious that it would have to go through so much.
“I was very afraid that maybe, when my baby was born, I would think it was ‘ugly’, and what kind of mother would that make me.”
Laura says she feared she wouldn’t be able to manage the complications and felt a sense of loss for the “perfect baby that I had dreamt of having.”
Kids born with clefts can experience a range of difficulties including with feeding as an infant and hearing problems as they grow older.
They will also undergo a series of operations to repair the cleft. For Scott that has seen him undergo surgery at eight weeks, three months and again at eight months.
He will have further surgery when he’s around ten as well as ongoing check ups with the cleft team, orthodontic specialist and speech and language therapists.
She is now using her own experiences to provide support for other parents and children after herself being inspired by those who helped her during Scott’s infancy.
About a week after the initial diagnosis Laura met the specialist cleft medical team for the first time - including Sylvia Blair, a midwife with the Western Trust who also worked as parent contact for the Cleft Lip and Palette Association (CLAPA).
“She answered so many of my questions and gave me so much reassurance,” she says.
“What she did for me is what I am hoping to be able to do for other families.”
That desire to help others has seen Laura undertake specific parent contact training with CLAPA - and be elected to the organisation’s UK wide fundraising committee - and establish the first Happy Faces support group in the north west.
At their first meeting last month, 12 parents and kids met for the first time.
“There are people coming who are pregnant and who have just found out, there are parents with cleft kids, parents at different stages of their own journey.
“It’s all about being there for each other, about letting parents know there are others going through the same thing, facing the same issues.
“It’s about giving it all a sense of normality,” Laura says.
Now the group are preparing for their first fundraising event on May 19 - a walk around the city’s three bridges getting underway at 2pm.
“It’s as much about raising awareness about the work of CLAPA and about clefts as it is about raising funds,” she says.
“Happy Faces has also a funday at the Playtrail organised for June 22 and if anybody wants to come they are more than welcome. It’s not just about the parents, CLAPA and happy faces are there for grandparents, brothers and sisters and the wider family,” Laura says.
As well as support CLAPA and Happy Faces offer a range of practical advice and information.
“I wouldn’t change Scott for the world - I’m in that place now that I am just so grateful to have him,” says Laura.
“And I want other parents out there to know there is support for them. I can be contacted anytime and health professionals now pass on my details,” Laura says.
“We want as many people as possible to get involved with Happy Faces, as things develop we’ll have more regular events.”
You can learn more online at www.clapa.com and sponsor the Derry walkers via www.justgiving.com/clapa
Anyone who wants to get involved or find out more about the Happy Faces group can get in touch with Laura via email:firstname.lastname@example.org