A Ramsgate gift shop worker is on a mission to raise awareness of the only UK charity devoted to helping parents whose babies are born with a cleft lip and/or palate.
Jenny Lyons, who works at her parents store Homebasics at 25-27 Queen Street, will be holding a cake sale and raffle to raise cash for The Cleft Lip and Palate Association ( CLAPA).
Every May the small charity holds an awareness week. This year it runs from May 6-14,and Jenny will hold her cake sale and raffle for the cause on May 12-13.
It is a cause which Jenny knows well.
The former Canterbury High student said: “When I was born my mum didn’t know I was going to have a cleft lip and palate as scans were not available. She had no help from a cleft team, no one to show her how best to feed me and resorted to spoon feeding me.
“Even now some parents feed their babies this way.
“I had my lip repaired at around three months old and palate repaired at 16 months. Both of these were done at King’s College Hospital, where I was born.
“I have had many operations since then including bone graft at 10 years old, rhinoplasty’s and a number of palate ops throughout my childhood, teenage and adult years. I had 6 years of braces to get my teeth straight.
“Being born with a cleft was difficult but I didn’t know any different.
“I am thankful for all the surgery I have been able to have over the years at various hospitals and also a very supportive mum and family. CLAPA is obviously a charity very close to my heart and I love trying to raise money for them.”
The 36-year-old, from Ramsgate, added: “The reason behind raising awareness by holding a cake sale and raffle is to raise funding for CLAPA to carry on with the tremendous work they do. This is not only with new parents but also with children and through teenage weekends away for team building, self esteem and confidence workshops.
“A lot of children suffer due to bullying because they look different or can’t speak properly. It’s so important for all children to not feel different and if they are being bullied they must tell someone.”
Each year 1 in 700 babies are born in the UK with either a cleft lip, cleft lip and palate or just a cleft palate.
This is caused at between 6-8 weeks into pregnancy and generally is picked up on at the 12 week scan. But the palate is not seen on a scan so parents won’t find out about the condition until their baby is born.
Babies with clefts are not always able to suckle so breast feeding is not always an option. The mum can express milk for baby and use a special bottle that is supplied from CLAPA and specialist cleft nurses will show mums how to feed their baby.
The lip is normally repaired at around 3 months of age and the palate about 9/12 months although these ages do vary from baby to baby.
The amount of operations also varies and can go on into a person’s teens and even adulthood. On top of the operations comes a time when braces are required on the teeth.
Speech therapy is another requirement, mainly if a cleft palate is involved, and can go in blocks over the years depending on further operations.
Glue ear is associated with clefts and can cause hearing problems, requiring either surgery to fit grommets or sometimes hearing aids are used.