Medical Info

CLAPA has parent contacts all over the UK, who can offer personal knowledge of the difficulties that can be faced by new parents of babies born with a cleft lip and/or palate.

If you would like to talk to someone you are welcome to call or email any parent contact directly. If you prefer, CLAPA will call them on your behalf and the parent contact will get in touch with you.

Just ring us on 020 7833 4883 or email .(JavaScript must be enabled to view this email address) with your preference and contact details.

Parent Contacts

Cleft Net East
  • Anita Swales
    Anita Swales

    I have a daughter born with Pierre Robin sequence. I enjoy playing the piano and swimming.
    Location: Northampton   T: 01604 230675   E: .(JavaScript must be enabled to view this email address)

  • Anne Steventon
    Anne Steventon

    My name is Anne, I am married to Danny and we have two children, Amber almost five (no cleft) and Leo aged three (born with a bilateral cleft lip and palate). We live in a small village just outside of Cambridge having moved here in the autumn of 2013. Leo is an incredibly happy, funny and adorable little boy who loves his big sister and is enjoying settling into pre-school in our village. I previously spent nine years working for a London Council in their ‘Healthy Schools’ team but am currently very much enjoying being a full time mum and settling into village life! Seeing as I have so much free time now I am a ‘stay at home’ mum (!!) I plan to launch a Happy Faces group for the Cambridge region in the New Year where I look forward to meeting more local parents. I am happy to speak to you if you have any questions or simply for a chat.
    Location: Cambridge   T: 07711 566694   E: .(JavaScript must be enabled to view this email address)

  • Kim Pieczka
    Kim Pieczka

    I am Kim, married to Robert (born with a cleft lip and palate) and we have two lovely daughters. Lara born 24.10.99 (non cleft) and Claudia born 12.03.02 with a unilateral cleft lip and palate which was diagnosed at the 20 week scan. My hobbies include reading, cooking and going for walks. We also have a gorgeous golden retriever called Lulu.
    Location: Northamptonshire   T: 07765 633901   E: .(JavaScript must be enabled to view this email address)

  • Marianne Ryan
    Marianne Ryan

    Hello, my name is Marianne and I live in Peterborough. I am married to Paul and we have a daughter called Jessica who was born in 2010 with Pierre Robin Sequence. We didn't know about our daughter's condition until she was born, when she had breathing difficulties and was rushed away to SCBU at Peterborough Hospital. Her condition was so severe that she had to be on her front at all times as otherwise she stopped breathing. She was also fed via a NG feeding tube for 6 months and we had several issues with weaning. Despite her tough start, Jessica had her cleft palate repaired at 1 year old, and is now a lively little girl full of character. She has hearing problems in both her ears but is otherwise doing well. I work part time for the Environment Agency, and enjoy chasing my girl around soft play areas and chilling with a good book.
    Location: Peterborough   E: .(JavaScript must be enabled to view this email address)

  • Maz Poole

    I'm Maz, I was born in 1977 and live in Norwich Norfolk. I'm married to Richard and we have two beautiful children Charlotte (Jan 2008) and Austin (April 2012). Both myself and my daughter Charlotte were born with unilateral cleft lip and palate whilst Austin was born with bilateral cleft lip and palate. Both my children's cleft care has been at Addenbrookes Hospital, which has gone very well. I love spending time with my family as my family mean a lot to me. If you have any questions no matter how small, then please do get in touch , its nice to be able to talk to someone else going through what I have been through and to be able to offer advice and support. I'm also now setting up a Happy Faces Norfolk/Suffolk group and will be organising monthly meetups so do feel free to come along I look forward to hearing from you.
    Location: Norwich, Norfolk   T: 07917881847   E: .(JavaScript must be enabled to view this email address)

  • Michelle Vogel
    Michelle Vogel

    Hi I am Michelle, I have four children – Chloe (born in 2006), Jack (born in 2007) and Ben (born in 2009) and Lily (born October 2013) . Ben was born with a cleft of the hard and soft palate which was a shock with no family history of clefts. Despite a shaky start he is now doing great, we are so proud of him! When not spending time with the children or working as a maternity care assistant I love reading, swimming and baking!
    Location: Cambridgeshire   T: 07921317452   E: .(JavaScript must be enabled to view this email address)

  • Paul Howell
    Paul Howell

    Hi my name is Paul, I have a wife Clare. I also have an awesome son ted who has a sub mucous cleft. When we found out 24hours after his birth we were confused and looking for advice and our cleft team came to the rescue with the welcome pack. After that we felt the need to raise awareness for CLAPA and became a volunteer. I am also a patient representative lead for the East of England and West Suffolk, I am branch committee member, and a parent contact. If I am not working or looking after Ted and Clare, I doing work with CLAPA, playing guitar or cycling.
    Location:   T: 07739578997   E: .(JavaScript must be enabled to view this email address)

  • Suzy Cardy
    Suzy Cardy

    My name is Suzy, married to Darren and I am mum to Isabel 7 (no cleft) and Oliver 4 who was born with incomplete unilateral cleft lip and gum notch. I work part time behind the bar in our local cricket and rugby clubs and I like reading, cross stitch and making jewellery. I take most things in my stride, try not to worry and take each day as it comes.
    Location: Suffolk   E: .(JavaScript must be enabled to view this email address)

North Thames Cleft Service
  • Claire Brown
    Claire Brown

    Hi, I’m Claire, my son Oscar was born in August 2012 with a complete unilateral cleft lip and palate. We found out at our 20 week scan that Oscar would have a cleft, it was a big shock at the time but have come through both his lip and palate repairs and he is now a very active and lively boy who keeps me on my toes! I also have an older son Josh who is just as active! Although I live in South Bucks, Oscar is under the care of GOSH who have been amazing. I run the Surrey and Greater London Happy Faces group along with Emma Harman (also a parent contact), if you want to have a chat or want to come along to our meet ups please email or call me.
    Location: South Bucks   T: 07702588001   E: .(JavaScript must be enabled to view this email address)

  • Emma Harman
    Emma Harman

    Hello I am Emma and I have one daughter, Florence Gracie who was born February 2011. She was born with a bilateral cleft lip and palate and has had 3 operations so far. Her mouth repair was at 5 months, her palate repair at 10 months and nose repair at 14 months. She is a beautiful, intelligent, happy little girl who I am very proud of. Shes also very feisty at times, which I am sure is from her operations. I have recently become a volunteer and have set up a Happy Faces Group in Surrey/Greater London, we have had several meet ups so far. It has been great meeting other families to share our experiences and chat and have play dates. I like going to the gym (when I can) love the outdoors on a sunny day and love music and dancing. If you have recently had a diagnosis or just fancy a chat or meet up please contact me, I would be more than pleased to help in any way I can. Perhaps you would like a glimpse into the future of having a child with cleft lip and/or palate. I look forward to hearing from you.
    Location: Shepperton, Surrey   T: 07557 680725   E: .(JavaScript must be enabled to view this email address)

  • Fiona Fryer
    Fiona Fryer

    Hi my name is Fiona, I'm married to Ben and we have 2 children. Abigail (4) born with unilateral cleft lip and bilateral palate, Sam (1) no cleft. We received the diagnosis of Cleft Lip and Palate at the 20 week ultrasound scan. Having no history of this condition it came as a complete shock to us. Abigail has had 2 surgeries, lip and palate and is due palate lengthening surgery very soon. When I'm not working or attending evening college, I enjoy spending time with my family and friends and walking our chocolate Labrador 'Millie'. If you have any questions or just need someone to talk to please feel free to contact me.
    Location: Colchester   T: 07543927392   E: .(JavaScript must be enabled to view this email address)

  • Jane Hughes
    Jane Hughes

    Hi I'm Jane and I live in East London. My younger son was born with a unilateral cleft lip and palate. Unusually for 19 years ago, this was diagnosed at my 20 week scan. He’s had several operations including lip, palate, alveolar ridge bone graft and is now nearing the end of his orthodontic treatment. My husband and I are currently dealing with ‘empty nest syndrome’ as both our sons are away at university.
    Location: London   T: 0208 518 8660   E: .(JavaScript must be enabled to view this email address)

  • Liz Henderson

    Hi, I’m Liz. I have 2 daughters, a stepson, a stepdaughter and 4 grandchildren (with another on the way). My grandson Joshua was born in March 2010 and diagnosed straight away with Pierre Robin Sequence, (later Sticklers Syndrome type 2, which affects his eyes, hearing, joints and cleft). Joshua’s condition was not known until he was born and was taken to SCBU at St John’s Hospital, Chelmsford and then on to Great Ormond Street Hospital. He was fed via NG tube for 9 months and had NPA tube as had difficulty breathing. At 9 months he had his palate repaired and at 10 months spent a week in hospital in an oxygen tent with Bronchiolitis. At 21 months Joshua had an operation on his eyes to reduce the risk of Retina Detachment (Cryotherapy) at Addenbrooks . Joshua has also spent time GOSH being assessed and had grommet’s fitted. Despite all this Joshua is a very happy, lively and bright 3 yr old who is on the go from waking to bed time (I wish I had half his energy). I work full time for Metrobank and my weekends are spent with my grandchildren (I find myself in great demand for babysitting duties).
    Location: Buckhurst Hill   E: .(JavaScript must be enabled to view this email address)

  • Sally Huggins

    My name is Sally Huggins. My Mozart inspired Classical pianist son was born in 1994 with a unilateral cleft lip and palate. Raised by me as a single parent, he's had a total of eight operations to date - the last ones were in the summer - 'bi-maxillary osteotomy'. He had both jaws broken and reset. Following 10 years orthodontic treatment, we are really looking forward to his braces being removed this December. He's now an undergraduate at Oxford University studying music.
    Location: London   T: 07595 548 927   E: .(JavaScript must be enabled to view this email address)

  • Yin Jones
    Yin Jones

    Hello, my name is Yin, married to Arwel and our baby Hannah was born in 2011 with a cleft palate and Pierre Robin Sequence. Hannah was fed via a NG tube for 10 months and had a nasal prong for 6 months. Hannah had her operation in February 2012. I'm a full time mum and enjoy meeting friends for tea and cake!
    Location: Twickenham   T: 07795 233217   E: .(JavaScript must be enabled to view this email address)

Northern and Yorkshire Cleft Service
  • Ruth Helstrip
    Ruth Helstrip

    I'm Ruth and I live in York. I am married to Steve and we have 3 Children: Will aged 9, Eva aged 6 and Chloe aged 4. Will was born in July 2003 with a left side unilateral cleft lip and palate which was diagnosed in utero at our 20 week scan. He had his first surgery at 3 months to repair his lip, his second at 9 months to repair his palate and will later this year have his alveolar bone graft. Will has had hearing problems due to glue ear and has had a number of grommet insertions over the years. Despite everything, Will’s speech is fantastic and he has only had speech therapy periodically over the years. He is an intelligent, funny, confident and sporty boy and is a member of CLAPA's Young People's Council. He absolutely loves being a part of this group and meeting up with the other members and it has done his confidence the world of good. He recently did a presentation about having a cleft lip and palate in assembly to 250 children and organised a bake sale which raised just under ?1000 for CLAPA! I work part-time at the University of York and enjoy cooking, reading, days out and family walks with our much-loved Springer Spaniel Amber.
    Location: York   T: 07910 866038   E: .(JavaScript must be enabled to view this email address)

Northern Ireland Cleft Service
  • Laura O’Neill
    Laura O’Neill

    Hi There! My son Scott was born Feb 2009 with a bilateral cleft lip and palate; this was diagnosed during my pregnancy at 21 weeks. He had his first surgery at seven weeks old followed by the complete lip repair at three months and then the soft and hard palate repair at eight months. All being well his next lip related surgery will be his bone grafting to the gum and teeth when he's approx eleven. Scott is a very happy and bubbly boy and is doing very well at school with his speech developing on track, my husband and I could not be any prouder of him. I know I would be biased but he is such a beautiful boy and although his cleft was quite severe he now has the most beautiful mouth thanks to an amazing surgeon, Chris Hill. I run a Happy Faces group in Northern Ireland to give other families like my own a network of support, you can visit our Facebook page by following this link: https://www.facebook.com/groups/529202330458705/638170902895180/?notif_t=group_activity.
    Location:   T: 07999706512   E: .(JavaScript must be enabled to view this email address)

  • Liz Wallace
    Liz Wallace

    Hi I am Liz and I was a parent contact for quite a number of years and due to other commitments I dropped of the radar for a while - but now I'm back! My son Ryan was born in August 2003 with a bilateral cleft lip and palate; this was diagnosed during my pregnancy and my care with the cleft team started then and has been wonderful. Ryan has had many surgerys, his first at 3 months old and several other after that. We're currently preparing for bone grafting with the Orthodontist. Ryan is a very happy, confident boy and loves all the outdoor activities he does with scouts but also his Xbox, iPad etc...... same as every other 11 year old boy I imagine. If you would like to chat you can contact me on the number or email below. I work full-time so may not pickup straight away but please leave your details and I will definitely get back to you.
    Location:   T: 07456054993   E: .(JavaScript must be enabled to view this email address)

Northwest England, Isle of Man, North Wales Cleft Service
  • Charlotte Hutchinson
    Charlotte Hutchinson

    I'm Charlotte , I was born in 1979 and I live on the Isle of Man. I am married to Mark and we have two boys Thomas who was born in 2010 and Oliver who was born in April 2014. Unaware to us before the birth of Oliver, we didn't know he had a Unilateral Cleft lip and living on a small Island the frequency of Clefts is very rare. Support and knowledge was extremely limited. We had to travel to Alder Hey children's Hospital in Liverpool to receive any care in relation to clefts and Oliver had his first operation by the most amazing Surgeon Mr Van Eeden in Aug 2014 which his results were incredible. I am very passionate to raise the profile on the Isle of Man and areas surrounding us, to help and share experiences, to let people know they are not alone out there and to help them see that amazing support and treatment is out there. Please feel free to contact myself if you have found yourself in an isolated situation or just feel you can relate to our dealings and I hope I can give you the comfort, reassurance and guidance you need.
    Location: Isle of Man   E: .(JavaScript must be enabled to view this email address)

  • Jen Miszke
    Jen Miszke

    Hello! My name is Jen and I live in Macclesfield, Cheshire with my daughter Ruby and husband Dan. Ruby was born in December 2011 with a unilateral incomplete cleft lip and had a small notch in her gum She is a happy healthy little girl. We found out that Ruby would be born with a Cleft lip at the 20 week scan. She had her lip repair done at 16 weeks old through which she was very brave and took it all in her stride. I am a full time Mummy and also work part time from home doing my husbands accounts. I enjoy spending time with family and friends, walking our dog Poppy, and reading. I have recently been involved with the set up of the Happy Faces Manchester group for which I organise the monthly meet ups, where we look forward to welcoming both pre and post natal cleft families and adults to join us.
    Location: Macclesfield   T: 07974 977187   E: .(JavaScript must be enabled to view this email address)

  • Louise Judge
    Louise Judge

    Hello my name is Louise, I have a son Oliver now 12 (DOB 15.11.2002) who was born with a cleft palate and PRS, I have been a parent contact since 2006 and have met and spoken to some wonderful people over the years. I work full time and have a very busy life with Oliver, watching him play football, taking part in loads of activities or having a house full of lads on the PS4. I have just completed by 2nd 10K run which was very rewarding going through the finish line knowing the money it had raised for CLAPA. I enjoy the odd glass of rose, going out with my friends and watching Liverpool FC! CLAPA has been a wonderful support to me over the last 12 years and being a parent contact means I can give something back, please get in contact, I would love to hear from you. You can call or email me.
    Location: Merseyside   T: 01744 810581 or 07989775947   E: .(JavaScript must be enabled to view this email address)

  • Maria Blackhurst
    Maria Blackhurst

    Hello, my name is Maria. I am married to Paul and we have two children. Our daughter was born with a cleft of the soft palate and we both have Sticklers Type 2, which affects our eyes. Our son also has food allergies. I am a primary school teacher and when I have time I enjoy days out, picnics, music and love to bake. I also organise the meet ups for Happy Faces Lancashire. To get in contact please email me at: .(JavaScript must be enabled to view this email address).
    Location: Preston   E: .(JavaScript must be enabled to view this email address)

  • Sarah Skey

    Hi, my name is Sarah and I live in a little village near Knutsford with my husband Chris and our little boy Luke (born in October 2013). Luke was born with a unilateral cleft lip and palate and he also has a small notch in his gum, we found out about Luke's cleft at our 20 week scan, it was a huge shock as there is no history of clefts in either of our families. Luke had his lip repair at 13 weeks and palate repair at 8 months old at the Royal Manchester Children's hospital. Luke is a very happy little boy, always getting into lots of mischief, we are so proud of him and are particularly proud when people comment on what a lovely smile he has! I have recently become and full time mum and I love taking Luke on long walks in his pram and we attend lots of playgroups and other classes together. I enjoy running, swimming and playing netball when I have the energy! I contacted a parent contact after our scan and it helped me so much, I would be really happy to do the same for anyone in a similar position. Please feel free to contact me to ask any questions or just for a chat.
    Location: Knutsford, Cheshire   T: 07734815112   E: .(JavaScript must be enabled to view this email address)

  • Sarah Thomas
    Sarah Thomas

    My name is Sarah, I’m 34 years old, married and have two daughters aged 5 and 2. My eldest, Erin, was born with a bilateral complete cleft lip and palate. I enjoy cooking, meeting with friends, walking the dog (Meg a Springer Spaniel) and spending time with my family.I also enjoy music (listening to and playing it) and reading – although I haven’t had the chance to get my teeth into anything recently other than childrens books!!
    Location: Llanbedrgoch   T: 01248 450486   E: .(JavaScript must be enabled to view this email address)

Scottish Cleft Network
  • Karen Weir
    Karen Weir

    My daughter Hannah was born with UCLP in 2001. I didn't find out until Hannah was born that she had a cleft so it was a bit of a shock. Hannah has had numerous operations on her mouth, the last one being the bone graft 2 years ago now which was very successful. I also have 2 other boys who haven't got clefts, Oliver (born in 2004) and Will (born in 2006). I am a full time mum and I also work from home. Karen also runs Happy Faces Glasgow.
    Location: Berwick upon Tweed   T: 07772 907897   E: .(JavaScript must be enabled to view this email address)

  • Lee Holland
    Lee Holland

    My name is Lee. I'm partner to Alison and proud father to Imogen (born 1998) and Mya (born 2013). Mya was born with unilateral cleft lip, palate and gum notch. Her lip was discovered at the 20 week scan and we were lucky enough to have a friend whose son was born with a cleft two years earlier. Someone with personal experience was invaluable to us during the first year from birth through operations. Mya had her lip repair at 5 months and palate repair at 10 months. Mya has made great progress and is a very sociable, confident and vocal little girl. If you want to talk about thoughts, concerns and hopes for your child then please give me a call or drop me an e-mail.
    Location: Johnstone, Renfrew   T: 07894 020321   E: .(JavaScript must be enabled to view this email address)

  • Nuria Fraile
    Nuria Fraile

    Hi, my name is Nuria. I live in Edinburgh with my two children (11 and 7) and my cat. I am originally from Madrid. My son (7) was born with cleft of the soft and hard palate. It was a bit tricky at the beginning, not having family around, but he has always coped really well. I work part time and I am also a milliner (love making hats). If you have anything you would like to know or just need a chat, just drop me a line.
    Location: Edinburgh   E: .(JavaScript must be enabled to view this email address)

  • Tina Sanderson
    Tina Sanderson

    Hi, my name is Tina. I live in Stonehaven with my husband Alan and two daughters, Shannon (13) and Lauren (6). Lauren was born with a unilateral cleft lip and a cleft of the soft and hard palate. She has had her lip and palate repair and is a very lively happy little girl. I currently work part-time and when I’m not at work I enjoy spending time with the kids, cooking, walking our dog and outdoor pursuits. If you have any questions or would just like to talk to someone please do not hesitate to contact me.
    Location: Stonehaven   T: 07917 415080   E: .(JavaScript must be enabled to view this email address)

  • Tracy Whiteside
    Tracy Whiteside

    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, S W Scotland   T: 07879854336   E: .(JavaScript must be enabled to view this email address)

  • Yvonne Buckner

    I have three children, aged 20, 17 and my youngest son was born in 2004 with a unilateral cleft lip and submucous cleft palate. He is a happy, healthy and popular little boy.
    Location: Edinburgh   E: .(JavaScript must be enabled to view this email address)

South Thames Cleft Service
  • Abbie Hills
    Abbie Hills

    Young mum to Alarna born in 2007 with a bilateral cleft lip and palate which has also affected her nose severely. Single mother during pregnancy and first 9 months, now happily married and settled, living and working in Lewes. Enjoy baking, swimming and clothes shopping when I'm not doing homework or housework.
    Location: Lewes, East Sussex   T: 07947162283   E: .(JavaScript must be enabled to view this email address)

  • Clare Sinclair
    Clare Sinclair

    My daughter was born in Sept 2013 with a bilateral cleft lip and palate. She has had three operations so far (at the Evelina London Children's Hospital) and recovered extremely well. She is now a rather energetic and cheeky toddler. We live in Surrey, along with my partner and two cats, and I work four days a week in Westminster. There is much to look forward to with parenting, but particularly as a first-time mum I understand how much harder it can seem after a cleft diagnosis and am happy to listen and share my experiences.
    Location: Surrey   E: .(JavaScript must be enabled to view this email address)

  • Kerry Dwyer
    Kerry Dwyer

    Has a daughter born with cleft lip & palate
    Location: Surrey   E: .(JavaScript must be enabled to view this email address)

  • Max de Grunwald
    Max de Grunwald

    Hi. I'm dad to lively Evie, who was born with unilateral cleft lip and palate in summer 2012 and am happy to talk to you about how cleft affects dads and families as a whole. We had some pretty anxious times during Evie's operations, but the surgery was amazing and Evie now has the most mischievous smile in South West London. When i'm not getting to know our local soft play centre, I can be found in the pub watching the football. Or the rugby. Or the cricket. You get the picture...
    Location: Balham, South West London   T: 07817159043   E: .(JavaScript must be enabled to view this email address)

  • Melanie Polczynski

    I have 2 daughters with clefts, one with a unilateral incomplete cleft lip and one with a unilateral incomplete cleft lip and palate. I was also born with a cleft.
    Location: Surrey   T: 07718 907882   E: .(JavaScript must be enabled to view this email address)

  • Patricia Chiswell
    Patricia Chiswell

    I work as a staff nurse on a childrens ward. I have 8 grandchildren and my eldest grandson has a bilateral cleft lip and palate. I love to do cross stitch in my spare time along with reading when I get a chance. I feel I am easy to get on with and would love the chance to help another family with a child with a cleft lip/palate or even a family member like myself.
    Location: Farnborough, Hampshire   T: 01252 540405   E: .(JavaScript must be enabled to view this email address)

  • Suzanne Chatt
    Suzanne Chatt

    Hello, I’m Suzanne and I am married with two daughters. Our elder daughter was born in 2009 with Pierre Robin Sequence and a cleft palate. She was diagnosed the day she was born in hospital and spent two weeks in special care. She also had a NG tube for feeding in her first year and surgery at nine months to repair her cleft palate. She wore hearing aids for three years but her congestion (glue ear) is currently clear. Our daughter also has additional needs. I am a full- time mum and enjoy cooking, listening to music and catching up with family & friends
    Location: Berkshire   E: .(JavaScript must be enabled to view this email address)

South Wales South West Managed Clinical Network
  • Amanda Drake-Worth
    Amanda Drake-Worth

    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
    Location: Plymouth   T: 07742844745   E: .(JavaScript must be enabled to view this email address)

  • Annie Clothier
    Annie Clothier

    Hi I'm Annie Clothier, my daughter was born in 2010 with a cleft of the hard and soft palate. I'm very involved with the South Wales branch of CLAPA and love the support I've found in this network. I love spending time with my family and friends.
    Location: Pontypool, South Wales   T: 07531035664   E: .(JavaScript must be enabled to view this email address)

  • Annie Drew
    Annie Drew

    I'm Annie, married with 4 children, and live in Calne, Wiltshire. My youngest child was born with a cleft palate in June 2010, diagnosed 4 days after her birth. She is a happy, noisy toddler now, experiencing speech difficulties but talks non-stop all the same! I am a qualified social worker, but currently enjoying a career break while I bring up my children. Being a Stay At Home mum keeps me so busy, I don't know how I ever had time for paid employment as well! My hobbies include baking and cake decorating, whilst listening to Radio 6 and discovering new music. I'm also enjoying a recent obsession with Pinterest! I am in the process of setting up a new Happy Faces group for the Swindon/Wiltshire area, an informal support group for parents of cleft children. If you would like to contact me, either as a Parent Contact or to join Happy Faces, please email .(JavaScript must be enabled to view this email address) or phone/text on 07929 410126 Best wishes Annie
    Location: Wiltshire

  • Lizzi Lewis
    Lizzi Lewis

    My name is Lizzi and am married to Lee. We have 2 gorgeous children. Baillee, born in 2006 (non-cleft) and Tomas, born in 2011, who was born with a cleft palate which was diagnosed at 4 days. He had his palate repair in Morriston in March 2012 and since then has gone from strength to strength. He currently wears a one hearing aid on the left side as he has a moderate hearing loss due to glue ear which we hope will improve when he is older. I am an active member of the newly reformed South Wales Branch and help to run the South Wales Happy Faces Group. As a family, we enjoy spending time together, watching TV, listening to music and being outside in the garden.
    Location:   T: 07850 683475   E: .(JavaScript must be enabled to view this email address)

  • Natalie Rigg
    Natalie Rigg

    I have a son, Ollie, born in 1999 with a unilateral cleft lip & palate. Ollie is my third child. I'm passionate about Rugby - watching my two boys play, and supporting Bristol Rugby Team. I enjoy cooking and long walks with my other half, Tony. I'm also partial to the odd glass or two of Cava with my girlfriends.
    Location: South West   T: 0117 9245445   E: .(JavaScript must be enabled to view this email address)

  • Sarah Bennett
    Sarah Bennett

    Hi I'm Sarah Bennett and I am married to Jonathan and we have two children. My eldest son Harri was born with an unilateral cleft lip and palate in 2003. I'm very involved with the South Wales branch of CLAPA and love the support I've found in this network. I enjoy being out and about and walking my german shepherd dog.
    Location: West Glamorgan   T: 01639 794145   E: .(JavaScript must be enabled to view this email address)

Spires Cleft Service
  • Alison Moody
    Alison Moody

    My name is Ali. I live in South Oxfordshire with my husband and two children. Seamus was born in 1999 with a cleft lip and palate. He’s now wearing braces following successful bone grafting to the alveolar ridge. I’d be delighted to hear from anyone dealing with cleft lip/palate.
    Location: South Oxfordshire   T: 07739559300   E: .(JavaScript must be enabled to view this email address)

  • Hannah Battye
    Hannah Battye

    My name is Hannah and I have a son with a unilateral cleft lip and palate. We found out at our 20 week scan about the cleft lip and palate and so have experienced what it is like to find out early and deal with the series of emotions & tests. We are a few years down the line now and dealing with other challenges that having a cleft lip & palate brings and happy to share our experience.
    Location: Oxford   E: .(JavaScript must be enabled to view this email address)

  • Laura Chaplin
    Laura Chaplin

    Hi, I'm Laura and I have two children. Harriet was born in 2006 and Konrad was born in 2013. Harriet was born with a cleft of the soft palate. I didn't find out until she was almost 2 days old, I had been trying to breastfeed with no luck until they realised why she couldn't feed. It was a big surprise as I'd never heard of a cleft palate before, was aware of the cleft lip, but hadn't realised you could get a cleft palate on it's own. Harriet had her repair at 6 months, grommets at a year and a half. Then when she was 5, Harriet had a re-repair and at the age of 6 a pharyngoplasty operation, with that one, she also had grommets fitted again. At the age of 4 Harriet had a hearing aid fitted for a short time. We have been told that Harriet would benefit from a Buccinator flap operation and she has decided for herself that she would like this next year (2014) All of Harriet's cleft care has been at the John Radcliffe Hospital in Oxford. I work full time, but term time only, in the daycare part of a foundation stage school and have worked with young children since 1998. I love spending time with my family, whether that be going for day trips, or just staying home together. I also love reading (when I get time) and have lots of hobbies that I have now put under one heading of 'papercraft' (too many to name individually now). I've found it a great help being able to speak to others who have been through similar, so please do get in touch, whether it be to ask questions, or just someone to talk to.
    Location: Oxford   T: 07879773577   E: .(JavaScript must be enabled to view this email address)

Trent Cleft Service
  • Andrea Barker
    Andrea Barker

    Hi, I'm Andrea and I have 3 boys. Owen (aged 12) my middle son was born with a unilateral cleft lip. When Owen was born with the cleft lip, saying that it was a shock to us was an understatement as it wasn't diagnosed before birth and there was no family history of the condition. Owen had his first operation, to close the cleft, when he was 11 weeks old and has also undergone further surgery, an alveolar bone graft, at nearly 10 years old. If you have any questions please get in touch via email and I will happily offer support or advice. I look forward to hearing from you.
    Location: Chesterfield   E: .(JavaScript must be enabled to view this email address)

  • Dervil Dockrell
    Dervil Dockrell

    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. We didn't know until he was born that he had a cleft palate. 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 as well as the usual methods etc. Ben finally got off tube feeding at 5 and a half and didn't speak in sentences till 4 and a half and neither boy slept through the night until they were 5ish. Ben has had extensive orthodontic treatment in Sheffield and hopes to be able to get rid of his braces by the time he leaves for university in 2016. He is a member of CLAPA Young People's Council also. It has been an interesting 17 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. I am happy to be a parent contact now that I have 5 minutes!
    Location: Sheffield   E: .(JavaScript must be enabled to view this email address)

  • Ian Smith
    Ian Smith

    Hello! My youngest son Ben was born Jan 2012 with a complete unilateral cleft lip and palate which was diagnosed at our 20 week scan. I felt quite apprehensive before Ben’s arrival as I had found the first few months quite hard with our eldest son Luke (born 2009 non-cleft) so was worried about the additional challenges we were going to face with Ben. One year, two operations and many highs and a few lows down the line I feel that I can offer support to other parents going through the journey we have been on so far. Ben is now a delightful little boy (I have to say I am still not a fan of the ‘baby’ stage!) and he has been an inspiration to us and we couldn’t be prouder of him. About me…well I’m your average man – work hard, enjoy a pint and avoid nappy changing at all costs!
    Location: Nottingham   T: 07971 309288   E: .(JavaScript must be enabled to view this email address)

  • Ruth Feather
    Ruth Feather

    I'm mum to Jacob who was born in September 2007 with a unilateral cleft lip and palate. He is a happy healthy little boy with lots of friends at school. He also wears hearing aids for glue ear and loves his little brother William who was not born with a cleft. I also run the group Happy Faces Sheffield.
    Location: Sheffield   T: 077 7903 4790   E: .(JavaScript must be enabled to view this email address)

  • Samantha Floyd
    Samantha Floyd

    My daughter Eloise was born in 2013 with a cleft palate, which wasn’t found until she was over two weeks old. Those first two weeks were so worrying and frustrating because Eloise wasn’t putting on weight, so it was really a relief when she was diagnosed with a cleft palate. Once we had a diagnosis and the Cleft Team got involved, everything improved and Eloise is doing brilliantly. I have two other older children and I’m a childminder. I’ve become a CLAPA Parent Contact so that I can help others, so please get in touch.
    Location: Leicestershire   T: 07736 716357

  • Tanya Clark
    Tanya Clark

    I live in Sheffield with my partner Dean and our gorgeous son Brooklyn who was born in July 2014 with bilateral cleft lip and palate. Brooklyn's cleft was diagnosed at our 20 week scan. I was expecting this to be the case as Dean has lots of family members both on his mum and dads side of the family who were born with cleft lips and/or palates. Dean was also born with a unilateral cleft lip and palate. I would add though this doesn't mean I was any more prepared for the journey ahead. I went through all the emotions that I am sure you all have/are going through now and I know how valuable speaking to other parents was for me, in fact it was the most important source of my research. I would like to give that same support and reassurance to you. I am happy to speak to anyone but as I am due to return to work very soon if you drop me an email I will then either respond to the email or if you wish leave your contact details and I will call you back. Remember you aren't alone and support is always available you just have to ask
    Location: Sheffield   T: http://www.facebook.com/tanyaclark.parentcontact   E: .(JavaScript must be enabled to view this email address)

West Midlands Cleft Service
  • Dena Corden-Lepetit
    Dena Corden-Lepetit

    My daughter Niamh is now five, we had an antenatal diagnosis of cleft lip and submucous cleft palate at twenty weeks confirmed at twenty two. I have an older son, Oliver who has no cleft. Find Dena on Facebook: http://www.facebook.com/dena.cordenlepetit
    Location: Staffordshire   T: 07838942590   E: .(JavaScript must be enabled to view this email address)

  • Jane O Grogan
    Jane O Grogan

    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.
    Location: Wolverhampton   E: .(JavaScript must be enabled to view this email address)

  • Nadine Steele
    Nadine Steele

    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.
    Location: Tamworth   E: .(JavaScript must be enabled to view this email address)

  • Nancy Bray
    Nancy Bray

    My lovely son Ruben was born in the summer of 2010. He was diagnosed with a complete unilateral cleft lip and palate at the twenty week scan, and has been under the care of the Cleft Team at Birmingham Children’s Hospital ever since. I already spend too much time in front of a computer, so not keen on extensive emailing/Facebook, but I would love to meet up with parents for coffee to chat about the joys and woes of surgery, hearing aids, grommets, expressing, speech therapy and all things cleft related.
    Location: Coventry   T:   E: .(JavaScript must be enabled to view this email address)

  • Paul Barrington
    Paul Barrington

    Hello my name is Paul and I am married to Emma, we have a beautiful little girl called Seren who was born in 2012 with a unilateral incomplete cleft lip with a notch in her gum. We had the diagnosis at our 20 week scan and I have to say initially we were blown away with the news. However with the support of our family, friends and the cleft team at BCH we started to come to terms with it. The CLAPA organisation and website was great in that it gave us lots of useful information but most importantly it helped us realise we weren't on our own. Seren has had her lip repaired and amazes me everyday, Emma and I are truly blessed. I am happy to speak to anyone if they want to so please feel free to contact me. Due to the nature of my work if you email me with your details I can then either email you back or call you whichever you would prefer. I look forward to speaking to you soon.
    Location: Worcester   E: .(JavaScript must be enabled to view this email address)

  • Selena Foster
    Selena Foster

    My name is Selena, I live in Redditch, Worcestershire and I am a full time mum to my 4 children Tyler (born 2004), Isaac (born 2009), Cameron (born 2011) and Lorena (born 2012). Lorena was born with a bilateral cleft lip and palate and she has had 3 operations to date. (2 lip repairs and one palate) I am an official volunteer/fundraiser for CLAPA and also run the Happy Faces Redditch support group. I enjoy spending time with my kids and when I get time I enjoy going to cinema & eating out. Please feel to contact me about anything big or small and/or pop along to our Happy Faces group.
    Location: Worcestershire   T: 07907 374992   E: .(JavaScript must be enabled to view this email address)