Hi, I'm Kirsty, partner to Scott and mum to Muhrin, Elise and Rhianne. At our 20 week scan Rhianne was diagnosed with cleft lip and possibly cleft palate. Rhianne was born in July 2015 with a unilateral cleft of the lip, hard palate, soft palate and gum notch.
Hi, I’m Stephanie. I’m mum to 21 year old twin boys. Joshua was born with a bilateral cleft lip and alveolus. He had his first lip repair at seven months, and has had several operations over the years including, bone grafting, revision of scars and orthognathic surgery in 2013. He has now completed restorative dentistry, and is delighted with the results.
If you have any questions or would just like a chat please feel free to contact me
My name is Clare and I live in Basingstoke with my husband and two boys Patrick and Alex. Patrick was born in 2005 with a unilateral cleft lip and gum notch and has had all his treatment at Salisbury Hospital. If you have any questions or need someone to talk to, please do not hesitate to get in touch.
I have a son, Ollie, born in 1999 with a unilateral cleft lip & palate. Ollie is my third child. I have been a volunteer with CLAPA for approximately 13 years now. I was part of the Bristol and South West Branch for many years, as Secretary and then Chairperson of the Branch Committee. I enjoyed the chance to meet and get to know a lot of families who came regularly to our Christms parties and other events. More recently I have been a member of CLAPA's Regional Fund Grants Committee, which I really value as I have been able to gain more of an insight into how CLAPA works. Through all this time I have been a Parent Supporter. I qualified as a counsellor 3 years ago. When I'm not working, I enjoy long walks with my terrier, Bertie, and a weekly yoga class. I’m would be really happy to talk to other parents or family members who need support at any stage of the cleft journey.
I'm the mother of twin boys born two months prematurely in 1997 in the USA. My husband David and I moved to Sheffield when the boys were 10 months old. Ben was born with a cleft of the hard and soft palate and some other oral problems that were later diagnosed as Van der Woude syndrome. He had his first operation at 3 days old and he had his palate repaired at 9 months. Killian was diagnosed with pyloric stenosis at about 6 months so both of my boys had extensive feeding issues due to reflux and behavioural problems and so were fed in a variety of ways e.g. nasogastric, gastrostomy, jejunostomy, squeezy bottles etc. It has been an interesting 18 years so far but I can say that they are now both healthy, well-adjusted boys and doing well at school so there is light at the end of the tunnel.
Hello, my name is Jane and I am the mum of George, who was born with a bilateral cleft lip and hard palate and a unilateral soft palate in April 2009. George had his lip and hard palate repair in July 2009 and his soft palate repair in October 2009. I have lots of experience with express feeding for a cleft child as I did it almost exclusively for a year, and I am happy to discuss this to help you get the right support if this is something you'd like to do. In February 2011, at the age of 22 months George was given hearing aids for his bilateral glue ear, which results in moderate hearing loss. He also has a very small fistula (a small hole) in has palate. He also has had speech therapy for his speech delay, due to his hearing loss and his cleft. Please contact me if you'd like to chat about my experiences with any of these issues or other cleft related issues. I am based in Wolverhampton and prefer to be contacted via email due to my work and study commitment.
Hi I’m Nadine, I live in Polesworth, Nr Tamworth. I’m married to Brad and we have a beautiful daughter Amelia who was born in 2010. We were told at my 20 week scan that our baby would have a unilateral cleft lip but they were unsure if the palate would be affected. This was such a shock !! We were immediately referred to the Cleft team at Birmingham Children’s Hospital. On 19th March 2010 our baby girl arrived, Amelia had a bilateral cleft lip and palate. Amelia is under Mr Bruce Richard & the cleft team at BCH, They performed a lip & partial palate repair at 4 months, then the rest of her palate at 6 months old. She had problems with her hearing which has now improved, but due to her earlier hearing loss she is under the local speech & language therapy unit to help improve her speech. Amelia is a happy, confident little girl, she calls her cleft “my lip palate”. She loves anything to do with Disney princesses & she loves dancing along to any music. I am always here with lots of support & happy to answer any questions, however how big or small.
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