Kayleigh’s Story: an update!

March 21, 2020

Kayleigh had previously been in touch with CLAPA to share her family’s story after the arrival of her little girl, Sydney, in 2018. Now, Kayleigh shares her experiences of Sydney’s lip and palate surgeries.

“Why try so hard to ‘fit in’, when you were born to stand out?”

I have previously submitted the beginning of our story and shortly after writing it my little girl, Sydney, got her first operation booking letter for her lip repair through the post. When I opened this letter I cried.

I cried because I had a date to work with, and it wasn’t too far away. I cried because I had fallen in love with her first smile and I didn’t want it to be taken away. I cried because it suddenly got real; my tiny little girl was about to undergo a massive operation and I was terrified!

Of course the weeks leading up to this date flew by, and more and more, day by day, I had a little more dread in me. I constantly took photos of her, close-ups of her cleft, videos of her smiling and laughing, selfies, the lot! I wanted to cherish that smile forever, so of course than meant getting a large canvas printed to capture her smile perfectly!

A couple of days before her operation, Sydney started to get a cold. I did all I could to shift it because the date was so close that I didn’t want it to change. As though she read my mind, she turned a corner and got better!

The night before, I packed everything we needed and barely got any sleep. We headed to Leeds General Infirmary and after a few checks and a short wait, we headed down to theatre. She was happy and content, she got put to sleep, and off she went. I paced the hospital, nervously waiting, and after 3 hours we got the buzz on the table, and headed to recovery room to see her.

Oh my, this stunning little girl, she had altered slightly. In the silence she went into theatre looking like my eldest and came out looking like my middle little boy, equally as beautiful as she went in, but with a whole new ‘face’ for me to fall in love with. You see, we are quite lucky! Not many parents get to fall in love with the same child twice, but we did! We went home later that day, around 12 hours post op!

You see, we are quite lucky! Not many parents get to fall in love with the same child twice, but we did! We went home later that day, around 12 hours post op!

The recovery was quick, and she amazed us with her strength and how she just kind of ‘bounced back’. The swelling went down quickly and she was soon back to her normal, happy self. Sydney’s big brothers dote on her massively, as do our other family members. Our little warrior draws everyone in with her big, brown eyes!

A couple of months passed and before we knew it, the next letter appeared on the doormat for her cleft palate repair. Though I felt some of the same emotions as before, it wasn’t as scary as ‘the unknown’. We knew what to expect this time: how to help her recover easily and what to do and look for. Her palate repair was around 5 hours long and although a little swollen, she looked amazing!

Once again she bounced back quickly and I documented the whole journey, using pictures, dates, times, everything, because once she is old enough to understand, she will show this journey off with pride! It’s been a whole year next week since she had her palate repair, and she’s doing absolutely amazing, hitting all her targets. Her speech and language is flowing nicely, and she’s all healed and content.

It’s been a whole year next week since she had her palate repair, and she’s doing absolutely amazing, hitting all her targets. Her speech and language is flowing nicely, and she’s all healed and content.

Sydney has had a bit of ‘glue ear’ since birth. This hasn’t cleared yet, however it doesn’t seem to be affecting her hearing and with her rapid progression of speech, it’s not holding her back. At the moment, as its not causing any issues, we don’t need to do anything.

I am so, so proud of my daughter and all of the other cleft babies and their parents too! Our children are warriors, they are amazing, and this is exactly why I have become a volunteer for CLAPA. I now run a local support group in my area for children and their families affected by cleft. This has been up and running for almost 6 months now and we have regular families who attend, with new ones joining monthly! It’s great to be able to speak with, and make friends with, other people who have been or are on the same journey as yourself.

Though my first thoughts when I found out about Sydney having a cleft were very mixed, I now couldn’t be any prouder if I tried. I had nothing to worry about, my little girl is amazing, she’s full of sass and confidence and I hope she stays this way!

As a regular fundraiser for CLAPA we are often doing events to raise funds and awareness too, because having a cleft is about a lot more than just an operation. It’s a journey, and a special one at that.

As a regular fundraiser for CLAPA we are often doing events to raise funds and awareness too, because having a cleft is about a lot more than just an operation. It’s a journey, and a special one at that.

I will continue to fundraise for CLAPA, and plan events to get more awareness out there, having raised over £2,000 to date I couldn’t be prouder. The cleft community come together as a big family, and I am proud to be a part of that.

If you are reading my story and have just found out about your own child having a cleft, I promise you that although it seems scary right now, it will become easier and more manageable. A cleft is just a little unique quirk, separating our children from the crowd, and showing the world that it is boring to all be the same!

Why try so hard to ‘fit in’, when you were born to stand out?

 

Thank you Kayleigh for sharing more of your family’s cleft journey!

Need to talk? If you’re worried about your little one’s surgery or have any other questions about cleft, you can chat to one of our trained volunteers as part of our Peer and Parent Support Service.

Find out more.