Clare’s Story

June 16, 2020

Clare and her family recently raised an incredible £448 for CLAPA with a socially distanced cake sale! We caught up with her to find out more about her family’s wonderful fundraiser, and why she chose to support CLAPA.

Sophie on the day she was born

Our beautiful daughter Sophie was born by Caesarean section on a February morning in 2018.  There had been a few complications in my pregnancy which culminated in a C-section following a low lying placenta.  When Sophie arrived, the midwife was concerned as her oxygen levels were low.  She was immediately taken for investigations and shortly afterwards, the Neo Natal team arrived to take her to ICU.

The midwife brought Sophie over to me before she left and I looked at my baby girl properly for the first time since she’d arrived. Her beautiful little face stared back at me. She was then whisked away to Neo Natal.

A few hours later, the consultant arrived to ask if I knew what a cleft palate was.  I was so confused; I’d seen my little girl’s beautiful face and immediately thought they must have got it wrong.

However, as I sat there, tears rolling down my face, the consultant explained that Sophie had a cleft palate… (not a cleft lip).  Until this moment, I had never realised that there was a difference.  Shortly after this, we were given the first opportunity to hold our baby properly.  She was absolutely perfect and despite an uneasy feeling of the challenges ahead, we were both overjoyed.

Shortly after this, we were given the first opportunity to hold our baby properly.  She was absolutely perfect and despite an uneasy feeling of the challenges ahead, we were both overjoyed.

My son, Daniel (then aged 5), came that evening after school and was immediately besotted with his baby sister. He asked why there were tubes and wires attached to her and we explained that this was due to an ‘extra hole’ in her mouth.  At this point, his ‘big brother’ instinct kicked in and he fell in love with her even more.

In the next 24 hours, a nurse specialist came and discussed the diagnosis. Sophie had been born with a cleft palate and a condition called ‘Pierre Robin Sequence.’  This meant that she also had a small jaw and her tongue was quite far back, flopping into the cleft and thus preventing her from breathing properly. Due to this, Sophie required both a feeding tube (Nasal Gastric) and an NPA (Nasopharyngeal Airway) to ensure she could breathe and feed properly. The nurse specialist guided me to the CLAPA website in order to try and further my understanding.

Due to my C-section (and the fact that Sophie remained in hospital), I stayed in hospital for a week and each morning, I would wake early and research Sophie’s condition using the CLAPA website.  The website became my life line in understanding her diagnosis, as well as reassuring me that everything would be ok. CLAPA’s support did not stop there.

The website became my life line in understanding her diagnosis, as well as reassuring me that everything would be ok. CLAPA’s support did not stop there.

Despite being fed via a tube, Sophie made excellent progress and we were able to combine this feeding with the use of specialised bottles and teats. Every time I phoned CLAPA to order these items, there was always a friendly voice on the other end, asking me how everything was going, and reassuring me that everything would be fine.  I’ll never forget that every single time I called, the CLAPA team would always ask how I was and how my family were coping. Little things like this made such a difference.

Sophie’s first bottle feed

Sophie arrived home a month later. We continued to feed her via an NG tube and both my husband and I became proficient in learning how to pass the NG tube and the NPA.  At the same time, Sophie was making excellent progress and moved on to specialised Dr Brown feeding bottles.  Again, CLAPA (along with Sophie’s nurse specialist) were always on hand to offer support, or just a friendly word when things got ‘too much.’

Their ‘welcome pack’ was a wonderfully detailed pack of information which was so useful in helping us understand the process ahead.  Daniel even asked if we could take Sophie to do a ‘Show and Tell’ at his school and the children’s book ‘Callie’s Cleft’ (which was provided in the welcome pack) went down really well when I read it to all of Daniel’s classmates.

9 months on and Sophie had her palate repair surgery, which went so well.  She is growing up to be a happy and loving little girl who is fiercely independent and has a brilliant sense of humour. She has a wonderful relationship with her big brother Daniel and their adoration for each other is a joy to see.  We are so thankful for all the support that we had from the hospital, but particularly from Sophie’s nurse specialist and of course, CLAPA.

Although we have donated via CLAPA’s website on occasion, we felt that we wanted to do a ‘fundraising’ event, particular in the current climate of Covid-19.  Our village Scarecrow festival was held on Saturday 31st May this year and we decided that it would be the perfect opportunity to hold a ‘social distancing cake sale’ at the end of our drive.  Daniel and I got our aprons on and baked over 100 items and we asked family members if they would be willing to bake or donate cakes to us; they didn’t disappoint.  With almost 300 cakes to sell on the day, we were set.

The sun shone down and we set up our stall.  Many people walked past and bought cakes, which was fantastic. However, what we were truly amazed at was the kindness of so many people who either donated all of their change or just donated without buying anything at all.  The generosity of our village and those from surrounding areas, was just overwhelming.  A few hours later, after selling our final biscuits, we counted up.

I had been hoping to make around £150 but, with an average of 40p per cake, I thought I might be a little optimistic.  You can imagine my surprise and absolute delight when the final total came to £334.21!  I was overwhelmed that one small cake sale could make such an incredible amount.  I posted our success on social media and a few more people came forward to donate.  Our final total became £448 and I’d like to take this opportunity to thank our wonderful family, friends and our wider community for all their support.

I am so pleased that we are able to donate this amount to CLAPA to say ‘thank you’ for the wonderful care and service they provide.  Having said this, this is our first event and I am hopeful that it won’t be our last!  Thank you CLAPA for all your support, kind words and encouragement at a time when the road ahead seemed so daunting.  You helped see us through and we will be forever grateful.

A huge thank you to Clare and her family for their amazing fundraising efforts, and for so kindly sharing their story.

Inspired by Clare? Find out how you can get involved too!

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