Our cleft story

Let your smile change the world, never let the world change your smile. It’s Cleft Lip & Palate Awareness Week, and these photos tell the story of Stanley’s first op, at 3 months old. His first, and second, smile.

I miss that first cheeky smile, the first smile that we fell in love with, a smile I will never forget, a smile that we didn’t want to let go, and a smile that I hope he is proud of as he grows older. Our Cleft Nurse always told us to take photos, take plenty of photos, and we certainly did! Our house is surrounded with reminders of this first cheeky smile. The emotions you go through regarding the change in appearance is immense. It was something that people tried to prepare us for, but something that we could never imagine until the little man arrived.

Although we knew it was the right thing to do, there was a part of us that didn’t want him to have that op… we didn’t want him to change. We treasured every cheeky smile of those first three months, and handing him over to his surgeon, Jonathan, was the hardest thing I have ever had to do.

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Stanley’s smile was in his hands, and those hours that we waited, hours of pacing up and down the hospital corridors, they felt like a lifetime. But Jonathan is an incredible surgeon, and an amazing guy – Stanley couldn’t have been in better hands. We are super lucky to have had a second cheeky smile to fall in love with all over again.

“…at least everything’s normal” – cleft vs. gestational diabetes

“Everything’s ok this time” … “oh I am so pleased for you that it’s all ok” *mention of Gestational Diabetes* “yeah…but you’ve not got the worry of that” … “at least everything’s normal”. It wasn’t just the words that made me want to scream back at her, but it was that look, that awful, patronising, look that someone gives you… when they have absolutely no idea. These comments refer to the fact that our little boy, Stanley, was born with a cleft, and that as far as we know from the scans, our second (who I am am currently pregnant with), doesn’t appear to have a cleft. This is my second pregnancy, and first time being diagnosed with Gestational Diabetes.

I think these comments stem from a cross between the myth that a cleft lip and palate is “purely cosmetic”, and that gestational diabetes simply causes “bigger babies”. In my first pregnancy, we found out at the 20 week scan that Stanley had a cleft lip (at some point I will write a post on what we went through at diagnosis), and from that day forward, we have been on a rollercoaster of a journey. We were lucky to have amazing support from our cleft team (Trent Regional Cleft Network), and in particular our Specialist Cleft Nurse, Caroline (a wonder woman!). We also have the invaluable support of Big Smiles, a local support group where Stanley has the opportunity to get to know other children that are on the same journey.

During pregnancy with Stanley, all we could do was prepare ourselves. Prepare for what his cleft would look like, prepare to find out the extent of his cleft lip and palate (though we had a pretty good idea from the scans we were provided). We prepared for the many possible outcomes, including problems with feeding, surgery, and all that the future may hold.

There was nothing that I could do that would change the fact that Stanley would be born with a cleft. Nothing I could do to change that fact that he may have associated hearing or speech and language difficulties. Nothing I could do that would change his future cleft journey. All we could do was equip ourselves with the knowledge of the many different outcomes that we could be faced with. Regardless of what I did during pregnancy, the same outcome would remain.

For Stanley, his cleft journey will continue, perhaps well into his adulthood, as he will continue to remain under the care of the cleft team, and have regular clinics to attend. He was born with a cleft of the lip, alveolus (gum), a split (bifid) uvula (dangly bit at the back of your throat), as well as a submucous cleft palate. His uvula and palate cause him no problems, but his cleft alveolus (also known as a “gum notch”, literally a gap in his gum), has meant that he will remain under the care of an Orthodontist. He has a tooth that has come through in his gap, but this has come through sideways, and when he is a little older (approx. 7-9 years), he will have more surgery  – an Alveolar Bone Graft, that will hopefully enable his adult teeth to come through properly.

So, to most people that see Stanley, they see that his cleft lip has been “fixed”, and automatically assume that everything is now ok. They either aren’t aware, or tend to forget, about things such as his speech and language therapy, or the future surgery he will have to undergo. They forget about the lifelong journey that he is on.

One thing that I remember Caroline (our cleft nurse) clearly telling us, was to take pictures. Take plenty of pictures (because some people don’t). So above is a selection of the many many pictures that we took before his first surgery, and before he got his second smile. I am so glad that we have so many pictures of his first smile, a smile that we will always cherish, and that I hope he will proud of when he grows up. The photos below are from his surgery at three months old, and of the moments that he came back from theatre. This was by far the toughest time that we have been through as a family.

But, this post isn’t aimed at Stanley’s cleft journey (I’ll have many more to come that focus on this!), rather the struggles that you face during pregnancy. The reality is that most people expect everything to be “normal” (there is no such thing), for everything to be ok when you go for a scan, for there to be no complications. People expect to find out if they are having a boy or a girl at their 20 week scan, they rarely prepare for the prospect that this may become secondary to something a little more serious.

Fast forward a couple of years and we have a little lady on the way. This time, I was more than prepared for a cleft diagnosis (and although her lip doesn’t appear to be effected, the prospect of a cleft palate remains in the back of my mind for her arrival). I was even prepared for something else to crop up at the 20 week scan. But, I hadn’t been prepared for a diagnosis of Gestational Diabetes (GD) at just 13 weeks (I am now 36+4, and so ready for her to arrive!)

When I’ve mentioned GD to others, I couldn’t tell you the amount of times I’ve received a comment about having a big baby (and often accompanied with a little chuckle). Most of time I shrug it off, and inform them that actually, this is just one of the many myths of GD, but sometimes I just don’t have the energy to explain it yet again. People have also assumed that I have a poor diet – “eating too many cakes”, or they have made comments about my size – “I thought you get diabetes when you’re overweight” or, “I thought only big people get diabetes”. Similar to how people assumed with Stanley’s cleft that it was “just” cosmetic, I have found that people tend to assume that GD “just” causes bigger babies.

In comparison to my first pregnancy with Stanley, I think the pregnancy in itself has been a whole lot more worrying. There isn’t a day that goes by that I haven’t got GD on my mind, there is no shutting it off or blocking it out. The difference is, there can’t be a moment that I let it slip my mind, because of the potential consequences. With GD (unlike having a cleft), there is something that I can be doing every single day that will hopefully help this little lady that’s growing inside me. I monitor my bloods at least four times per day, I take metformin, and I follow the 8 golden rules to eating (low carb, low sugar, plenty of water, “pairing” foods etc.). I have the support of two wonderful Specialist Diabetes Nurses (Sarah and Janet), who are just a phone call away, I attend regular clinics and scans to monitor the fluid around baby and to monitor her growth. Because, GD isn’t just about big babies!

There are so many scary complications to GD, that every day I remind myself that the more I try to control and manage it, the more I am lowering our chances of experiencing any of these. Baby and I will now always have a higher risk of developing Type 2 Diabetes. Up to 50% of woman diagnosed with GD develop Type 2 within 5 years of the birth (NICE). That’s a scary statistic! As a side note, if you have been diagnosed with GD then I would highly recommend the Gestational Diabetes UK Mums Facebook Group, you can learn so so much from the admins of this group, and receive so much support from others that are going through the same. They also have an incredible website, where you can become a member (so worth it, even just for the GD friendly brownies – they have saved me!)

So, whilst some may see GD as the “better” alternative to having a baby with a cleft, perhaps because of the outward facing nature of having a cleft lip and the superficial society that we unfortunately live in, I beg to differ. There really is no comparison between a diagnosis of a cleft, or GD. Each have been equally tough in there own rights. GD, I hope, will mostly stay refined to pregnancy and birth, whereas the consequences of having a cleft will be with us for a little longer.

Either way, I would not change anything for a single second. We fell in love with Stanley’s first smile, and fell in love all over again when we saw his second. Similarly, reaching the end of this pregnancy, and little lady arriving into the world as safely as possible and being ok, will be a huge relief. I hope that through both of these journeys we can help our little ones grow into confident, and compassionate, people.

And, if we are lucky enough to have baby number 3 one day… I will be prepared for just about anything, and know that whatever happens, there is always someone out there that cares, and is willing to offer support. No matter what you are faced with, you will no doubt come across that one person who makes one of those comments. The ones that hit you hard. But, always keep in mind that this may not be out of malice, but rather them being unaware. The more we can educate, inform and raise awareness (of things such as cleft or GD), the less likely others are to be at the receiving end of those difficult comments.