Charity stalwart to pass the torch at CLAPA

Gill is the chairperson for the Sussex branch of the charity CLAPA, the representative organisation for all people with and affected by a cleft lip and/or palate in the UK.

The charity provides a support network within the community, so parents of children born with a cleft lip or palate can meet for reassurance, advice and social events.

Gill, 52, of Brooklands Avenue, Worthing, said parents can leave hospital feeling lost after giving birth to a baby with a cleft lip, and need the support so they may give the best care possible to their child.

“As a parent, you can think ‘What have I done wrong?’,” she said.

“It is very difficult to talk about these things with people who have no experience of cleft lip palate conditions.

“Especially in the early stages, and when the children go for various operations to help correct it.

“It’s good to be able to speak to someone who has been through it.”

A cleft lip or palate develops during early pregnancy, when separate areas of the face develop individually and then join together.

If some parts do not join properly, the result is a cleft, the type and severity of which can vary.

Babies born with a cleft lip or palate can have problems feeding, may have affected speech and can suffer problems with their hearing.

CLAPA Sussex raises money to buy bottles to give to hospitals in the area, as well as donating money to speech therapy units.

Gill knows exactly what support parents need, as she has been through the experience herself.

Her son Ryan, now 23, was born with a unilateral cleft lip and palate, which had not been picked up until he was born.

“It was difficult at the time because it was unexpected,” she said.

“Ryan had to be fed through a squeezy bottle with a lamb’s teat on the end. But his cleft lip was part of him, and we actually felt strange about it when he had his first operation to have it repaired.”

Ryan went on to have another six operations to repair his palate, but was born without a sense of smell, which he will never have.

Gill said she became the chair of CLAPA because she wanted to help others like herself.

“I know how appreciative I was of help from others,” she said.

“So I wanted to be there for other parents, too. However, I have been here a long time and it is time for me to step down and let a new face step in.”

Paula Tyler has also chosen to step down after working alongside Gill for the past 11 years.

The 43-year-old mum, of Manor Road, Upper Beeding, got involved with CLAPA after her daughter Gemma was born with a soft cleft palate.

Paula said: “Because Gemma does not have a cleft lip, we did not realise she had a soft cleft palate.

“I was worried because she wouldn’t feed and it was only when a nurse picked her up when she was crying and saw the hole in the roof of her mouth we realised.”

Paula could only feed Gemma using a cup and spoon.

“It was a bit of a nightmare trying to feed a newborn baby with only a spoon and a cup,” she said.

“But then CLAPA rang us when they heard we had a baby with a soft cleft palate, and provided us with a bottle with a lamb’s teat.

“Then we never looked back.”

Gemma, now 11, had an operation at six months to repair her palate, and lives a completely normal life – even playing both the clarinet and the saxophone.

Paula said she found the support CLAPA gave to her when Gemma was born invaluable, and got more involved with the charity to give something back.

“Being born with a cleft lip or palate is more common than you think,” she said.

“If your baby is affected you can feel quite alone, and you really appreciate the support of others around you. My 11 years at CLAPA have been wonderful, but it’s time to let someone else take over, and I hope they will enjoy the experience as much as I have.”

For more information on joining CLAPA Sussex, contact Gill on 01903 502868 or CLAPA chief executive Sue Carroll on 020 7833 4883.