As part of my continuing series of blog posts for Cleft Lip & Palate Awareness Week, I’m absolutely delighted to have had the opportunity to interview Annie Clothier, whose daughter Ayla was born with a cleft palate. Annie is truly inspirational and she volunteers for the Cleft Lip & Palate Association.
Tell us a bit about yourself and what you do.
My name is Annie Clothier I am a Clinical Nurse Specialist. I’ve been a qualified nurse for 15 years and absolutely love my job. I consider myself to be in a very privileged position helping people when they are at their most vulnerable.
My husband and I have been married for 12 years and in 2010 we became very proud parents to our little minx Ayla. I had a relatively normal pregnancy up until 29 weeks when I developed a condition called cholestasis which meant my liver wasn’t working as it should. So the last few weeks of my pregnancy were medicalised very suddenly! In April 2010 Ayla was born and everything was wonderful for the first few hours then she wouldn’t feed. I had set my heart on being able to breast feed and with the help of a very burly midwife we tried and tried to get Ayla to latch on but to no avail. I felt like a failure that night. A very sweet midwife looked after me on the ward and helped me to express some milk which I was then able to feed to Ayla through a syringe. The next morning we were seen by the paediatricians and they were examining Ayla in her cot by the side of my hospital bed and I overheard them saying she had a cleft. They left and did not say anything to me.
A short while after a midwife arrived and pulled the curtains around the bed and sat down to explain to me that the doctors had found a cleft palate. At that moment I felt so alone. All the other mums in the room could obviously hear that there was something wrong. The midwife was unable to answer any of my questions and when the doctors returned they started to talk about her possibly having all these other problems I just couldn’t take it all in. I telephoned my husband and asked him to come in to the hospital as we were being referred to a specialist cleft team and they would need to speak to us both. A few hours later my saviour arrived in the shape of my wonderful Cleft Nurse. After sitting with her we knew everything was going to be alright and the dark picture that had been painted by the ill-informed doctors was not the case and thus began our journey with the Cleft Lip & Palate Association (CLAPA).
Ayla had her palate repair in 2011 when she was 7 months old. That was a very difficult time as you hand your child over to people and wait patiently for her to return. The team prepare you for the fact that your childs cry will sound very different but its still a strange feeling when you hear them cry for the first time post op. She did extremely well and continues to do so 4 years on.
Why did you decide to get involved as a fundraiser for the Cleft Lip & Palate Association?
I decided to get involved with CLAPA to give back to the charity that has helped us so much. I joined the Facebook group and started chatting to other parents. I started to want to meet up with other parents locally and started looking for other families on the group that lived near us. I found Lizzi and Lorayne who were also very keen to be involved with CLAPA. We got in touch with Claire Cunniffe at CLAPA HQ who encouraged us to attend a volunteer induction day. We knew that we wanted to set up a support group as we felt this was something we would of liked to of attended. We left the induction day agreeing to try and re-establish the South Wales Branch as it had folded a few years earlier. I then went on a hunt for more willing volunteers to help join our committee. I scoured the parent contacts list and found Sarah who was more than willing to join us. The branch was reformed in 2012 and we have been going from strength to strength.
What is the most rewarding thing for you about getting involved with CLAPA?
The thing I love most is seeing the parents chatting on our South Wales Facebook group. A question is posted and the responses are fantastic. The cleft community is such a warm and supportive family.
We have a wonderful success story of two boys that have become the best of friends as a result of the South Wales branch reforming. What is also wonderful is that the parents have also become great friends as a result.
I’m also so proud of my husband who gets involved with supporting CLAPA in his own way. He is a keen musician and plays in a heavy metal rock band. In 2013 he organised a music festival in our local pub. He managed to get a few bands to play for free and the festival was really well attended, raising funds for CLAPA and awareness of cleft lip and palate. The festival is now in its 3rd year and gets bigger each year.
Our first Happy Faces group was wonderful as I don’t think we could believe we actually managed to pull it off. The branch is very lucky that we have such fantastic support from the South Wales Clef team, who advertise our events at clinics and all of the new baby packs have an information leaflet about us in them.
Since then we have held 2 hugely successful Xmas parties where we had over 300 people turn up.
And as I mentioned earlier my husband’s music festival ‘Bulletfest’, which also does very well.
Describe a typical day for you?
I get up early, prepare Ayla’s lunch box ready for school. I race out the door and do the school run then it’s off to work for me and hubby. My typical day consists of clinics and patient visits sometimes I have lectures to give on study days for the nurses. Then it’s off home, Daddy’s picked up the minx and we all try to sit down for tea together. I like to exercise, so if I can fit in a run for a few miles I will try my best. After we have settled the little minx up to bed we might get chance to watch a bit of TV or a film. Then it’s off to bed to get up and do it all again tomorrow.
What do you feel are your biggest achievements?
This is a tough question for me to answer. I love to be busy and always enjoy a challenge. I am proud that I’m a nurse and consider that an achievement. Becoming a Clinical Nurse Specialist in Tissue Viability was a dream of mine since becoming a student nurse and I felt very determined that I would get there and in 2004 I started a secondment that led to a fulltime post. I’m currently studying towards an MSc in nursing so completing that will be an enormous achievement for me.
What’s in your handbag?
Sweets!!! Crayons and paper, my mobile phone, alcohol gel, tissues, a resuscitation facemask ( I once had to stop at a motorbike accident and give CPR) and my keys.
What are your ambitions in life?
I want to be a good mum and teach my daughter to be strong and proud of who she is. This has become so much more important since we found out about her cleft. She is a formidable young lady already and very determined. If my daughter is happy then I’ve achieved my ambition.
Where do you see yourself in five year’s time?
Well I’ll be 44 then so still working. I’d like to be still in the same job as I’ve worked hard to get where I am and do enjoy what I do. It’s very important to me to still have patient contact as that’s where you make a difference in nursing.
What advice would you give to someone starting out as a fundraiser/volunteer for a charity?
Contact the charity and offer your services ask them how you can help. The charities will be glad of your help and enthusiasm. I would say don’t lose hope as it is a struggle sometimes but all your efforts are worth it and do make a difference to the people your trying to help. I would surround yourself with like-minded people as there is strength in numbers and you will have louder voice.
Finally, happiness is…
Life, because you only get one and it’s up to you to make it the best that it can be.
Feel free to contact me firstname.lastname@example.org or find us on facebook under CLAPA South Wales.