Hi my name is Joanne, I'm married to Bobby and we have 2 children. Kailin was born in 2006 with Bilateral cleft lip and palate and Christopher his brother was born in 2008 with no cleft. During our 20 week ultra-scan the medical staff detected a problem with Kailins face but were unable to make a definite prognosis. After 10 weeks of scans we were finally told that our baby boy had a bilateral cleft lip and plate.
We were shocked as having no family history on either side with this condition. We were handed a leaflet and told not to go on any bogus websites just the CLAPA site. Feeding was a problem as he couldn’t suck and I was constantly being told by non-cleft medical staff to breastfeed which was pretty stressful and impossible for me, my husband and Kailin, but with the help from the cleft nurses and special bottles through the CLAPA website we found our own routine. We noticed he had some hearing and speech complications which as parents were pretty scary but to date Kailin is a happy and confident little boy who has a great bunch of friends, every day he shows me what a strong spirit he has, with a get up and go attitude. He has had 8 surgeries, all on his lip and palate (soft and hard palate) he has glue ear so had two lots of grommets (one when he was 4 months and then again at 4 1/2 years) just this year he has had a Alveolar Bone Graft . Currently he wears one hearing aid on the right side as he has a moderate to high hearing loss due to glue ear which we hope will improve when he is older and a brace in his mouth and attends speech therapy from time to time.
My aim as a parent supporter is to help as many people who may have similar anxieties and feelings to the ones I felt when Kailin came in to our lives. I became part of the Glasgow Branch Committee in 2015 to be part of a group and to be a voice for my community. If you have any questions or just fancy an informal chat please contact me on the telephone number or e-mail below. I work full time so if I don’t respond immediately please be assured I will be in touch at the first opportunit
Hi my name is Colin,
I am a father of three girls, yes I know I will never be able to retire! I work in the oil industry, prior to this job I was a full time prawn fisherman working on the west coast of Scotland.
My youngest girl Verity (born March 2016) was born with a unilateral cleft lip and palate.We found out Verity would have a cleft at the twenty week scan and at this point I’ll be honest I knew next to nothing about cleft lip and palate. I had so many questions going round in my head. Verity has now had her lip repair done (at 12/13 wks) and her soft palate repair done (at 28/29 wks) and she is doing great, the strength she has shown is amazing and always manages a smile.
My girls are my world.
If any of you need advice or have those questions, no matter how small, or feel like you need a friendly ear from someone who has felt all those feelings you might be going through, feel free to contact me.
Hi, I'm Carolyn from Belfast and proud mummy to Byron born in Feb 2013, with unilateral cleft lip, palate and gum notch.
Byron's cleft was diagnosed at a 4D scan at 25 weeks, it hadn't been picked up at regular anomaly scan. It was a massive shock at the time, as we have no family history and had little knowledge of the condition. Byron was born slightly early but beautifully healthy at 36 weeks and I tried various feeding techniques before settling on expressing and bottle feeding, which worked well for us.
He had lip and hard palate repair at 6 months and soft palate repair at 1 year old. He bounced back from these really well and his repair is an amazing job. Since then we have had issues with glue ear, Byron has had grommet insertion and since had them removed, we are currently exploring other options, and he is also receiving weekly speech therapy, but is coming along great, happy and healthy and full of fun, he never lets anything get to him and that resiliency is such a positive force when sometimes I worry about him.
It has been a difficult journey at times, but all in all, I believe it has made us a stronger family unit. I have always benefited from talking to other people going through similar experiences and would like to pass that on to any other families that feel they would like someone to talk to.
Hi, I’m Lindsey. I live near Brighton in West Sussex.
I am mum to 7 year old Martha, who was born eight weeks prematurely with Pierre Robin Sequence and a cleft palate which was not diagnosed antenatally. Martha had her palate repaired at ten months of age at the Evelina after spending six weeks on the Special Care Unit after she was born, being tube fed and having a nasal prong.
Martha struggled to gain and maintain weight and had some hearing and speech complications, which at the time was scary and worrying, however she is now an extremely active, happy and confident little girl and proves to me every day what tenacity and spirit she has! My aim as a parent contact is to help as many people who may have similar anxieties to the ones I felt when Martha was younger.
I love to be outdoors, dog walking and making the most of our beautiful local beach and countryside and love a bit of baking!
If you have any questions or just fancy an informal chat please contact me on the telephone number or e-mail below. I work full time so if I don’t respond immediately please be assured I will be in touch at the first opportunity.
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 live in Plymouth with my husband Marc and I have three children, Jonathon, Ami and Aaron. Ami was born in 1992 with a bilateral cleft lip and palate and has undergone many operations. My aim is to help as many parents as possible who have worries or anxieties about their babies or children with similar problems and the difficulties they may face. I run a Happy Faces group in Plymouth, a great opportunity to meet parents and children with clefts. I am opening a CLAPA Branch in Plymouth, covering Devon and Cornwall, in early Jan 2014. Find Amanda on Facebook: http://www.facebook.com/MandyDrake-Worth
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.
Hi, I'm Tracy and I'm married to Andrew. We have 2 boys Josh & Ryan. Our youngest son Ryan was born in March 2003 with a UCLP. We found out at our 20 week scan. Ryan's lip was repaired at 5 months, first palate op at 10 months, second at 5 years and bone graft in November 2012. I work part-time and my hobbies are meeting up with friends and family, reading and spending time with my boys. If you have any questions or would just like to talk to someone please contact me on. Location: Annan, SW Scotland
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