Cleft lip and palate awareness week highlights something not widely spoke about and this blog post is inspired by not one but now two nephews with cleft lips and palates – the first is four years old and the second nephew on the way due August – a third was misdiagnosed and amazingly was born without facial differences (or maxio facial differences) The featured image is of my nephew Oliver which I’ve been given permission to use and he’s an incredible child – bright, gentle and loving.
I want to talk about the stigma attached to such a facial deformity and I felt it was perhaps a small town girls job to talk about such matters but this post is about what it is like to have a child with a cleft. What the eyes of a mum sees. What the heart of a mum feels. What a father, brother, nana, any family members would feel. They felt the stares and heard the whispers but eventually just didn’t dwell on it and moved on and they had a new normal. They could predict the places they’d go and get more stares than normal and learned that there were those that were just downright terrible regarding how they view clefts and also learned that there were those that weren’t sure how to respond or how to talk to the. After all, we life in a world that defines beauty in certain ways and sometimes it is hard to see beauty where the masses do not. There was still beauty. Just like his older sibling, he captivated them. His big cleft smile completely changed them.
As thankful as they are for an incredible surgeon and a successful surgery, I believe at times they miss that first smile and it makes them sad that not everyone got to know their boy prior to surgery and maybe even feel like they missed out by not seeing his first beautiful smile. Not many people get to have two completely different but similar smiles in life. We all have scars and they all tell a story.
The news came as a shock to my brother and his wife – in fact to everyone. Questions like how? Why? What next? Four years have passed and eventually they have accepted and dealt with the issues that still continue due to this issue, for example, speech or hearing. Having a child with a cleft lip and watching how the world responds to him pre and post surgery has been interesting and to see the scar take place after healing whether on his face or on the parents hearts have been amazing.
Finding out that your baby has a cleft lip and or palate can be a shock for parents and the ongoing experience will be emotional because we all want our children not to go through pain, we all want them to ‘fit in’. There can be many challenges for new parents in this situation including feelings of guilt, post-natal depression, getting used to the way your baby looks, and issues with feeding and treatment for the cleft. A child born with a cleft lip and or pallete will be cared for by a regional cleft specialist team and will undergo operations for lip and/or palate repair. He or she is also likely to receive lots of dental treatment and speech and language therapy and hospital appointments as well as meetings with different health professionals from the cleft service team.
Most of the families found a good level of support amongst their own family and friends but they also acknowledged more specific support from health professionals working in the cleft service.
Are ultrasounds for cleft lip 100% accurate? The answer to that is no. Their third baby’s anatomy scan at 20 weeks showed what their doctor said was an extremely probable cleft lip and they went to see a specialist for the followup scans in Nottingham several occasions yet no facial issue at birth so mistakes can be made even with the best ultrasound techs and machinery.
I spoke to a woman called Karen based in Lincolnshire UK who has also experienced a Cleft baby and her daughter has developed amazingly – built with strength of character, zest for life and no reason for anyone to view her any differently because this isn’t something that can stop them achieving anything!
We were sent to Nottingham for our 3D scan that also picked up a heart murmur so we were sent to Leicester for further scans with a heart specialist and offered further invasive tests incase of a syndrome – which we turned down.
Faith had her first surgery on November 21 2013 at QMC, with Mr Neil-Dwyer as her surgeon, the wait was awful but when we saw her we just fell in love all over again! We had been so worried that we wouldn’t recognise her after loving her wide smile for so long but we needn’t have because she was still perfect. She had her second surgery for her palate in march of 2014 again in QMC with Mr Neil-Dwyer, and we haven’t looked back since.
Faith is an amazing creature, full of adventure and wonder and sometimes i amaze myself that I haven’t killed her off yet for her cheek but shes our monkey and we love her and we wouldn’t change her for anything!”
The below information is from the site Clapa which is a site that gives amazing information on alsorts of groups near you plus images and facts.
In early pregnancy, different parts of a baby’s face develop separately and then join together. If some parts do not join properly, the baby is born with a cleft.
- A cleft lip and/or palate is the most common craniofacial abnormality, which is a problem to do with the skull and face.
- A cleft lip can range from a little notch in the coloured part of the lip to a complete separation of the upper lip which can extend up and into the nose. This can affect one side of the mouth (unilateral) or both sides (bilateral), and can be complete (meaning the cleft goes up into the nose) or incomplete.
- A cleft lip can also affect the gum where the teeth come through. Again, this can range from a small notch to a complete separation of the gum into two parts.
- A cleft palate is a gap in the roof of the mouth. The back of the palate (towards the throat) is called the soft palate, and the front (towards the lips) is called the hard palate. A cleft can affect the soft palate or both the soft and hard palate.
- Occasionally, after surgery, small holes (fistulae) can form.
- Sometimes a baby with a cleft palate may have a small lower jaw (mandible) and a few babies with this combination may have difficulties with breathing. This condition may be identified as Pierre Robin Sequence.
- Around one in 700 babies are born with a cleft around the world. That’s around 1,200 babies born with a cleft each year in the UK! Of these, around 45% will have an isolated cleft palate, 24% will have an isolated cleft lip, and 31% will have a cleft lip and palate. Bilateral cleft lip and palate is the least common type, at just 9%.
The cause? No one knows exactly what causes a cleft. Research tells us it’s often caused by a combination of different genetic and environmental factors.
- Genetics is all about things inherited from family members, like eye and hair colour. With a cleft, sometimes there is a clear family link, other times it just happens as a ‘one off’.
- Environmental factors mean things that happen just before or during pregnancy, like taking a certain medicine or how the baby starts growing in the womb.
- Most of the time, a cleft is caused by genetic and environmental factors coming together in a way which can’t be predicted or prevented.
- Sometimes a cleft is caused by part of a ‘syndrome’, which is when lots of different symptoms happen together.
- You can have a cleft lip, a cleft palate, or a cleft lip and palate. A cleft palate by itself is often called an isolated cleft palate.
If you have a child with a cleft, it is very unlikely to be because of something you did or did not do.
This is a really interesting post, I don’t know anyone with a child who has a cleft lip when they were born so I am glad I read this post. It has given me lots of information, thank you. Every baby is beautiful no matter what, they are all miracles. Thanks for linking up with #GetMooreFromLife
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Thankyou and I’m glad I can spread awareness 😊
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Revisiting from #GetMooreFromLife
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Hello!
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Thanks for a very informative post on a subject I previously didn’t know much about. #thatfridaylinky
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We had a lad at school with a cleft lip. Sadly it seems views haven’t moved on from the 80’s.
Your nephew is beautiful and has such a loving support family I’ll sure he will grow up to learn to ignore those few who are ignorant.
Great post
#thatfridaylinky
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Such an informative post. Thank you for raising awareness #Blogstravaganza
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Really great post and I found it so informative and I am sure there are so many parents who will find it much needed help. thanks for sharing #Blogstravaganza
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Thankyou for commenting!
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This is such an informative post, it’s really good to raise awareness of this. Thank you so much for sharing with #Blogstravaganza xx
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So much to learn in the world. Thankyou for your comment
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A really informative post! I always always always smile & meet the eye of parents with babies with a cleft lip or palate when I see them – they are beautiful just like any baby #DreamTeam
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They are indeed 😊
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This is a really informative post. I’m ashamed that I didn’t know about the different ways it can affect children #dreamteam
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Never be ashamed of not knowing something, there’s lots people don’t know if they’ve never known anyone with it 😊
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What beautiful children! A fantastic post to help raise awareness, great writing. #MySundayPhoto
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Aww thankyou so much
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Brilliant post! Thanks for educating me better about this condition. #mysundayphoto
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Hopefully it was good to read!
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Thank you for raising awareness of this issue, it is much more common than people realize but many don’t know anything about it. #DreamTeam
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Thankyou for your comment I appreciate it
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I’ve only ever known one person who had a cleft lip, the scar was barely visible. A really informative post on something that isn’t spoken about much #TriumphantTales
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These days it’s amazing what they do! I hope my nephew who is due is August with his bilateral in the future can progress from it, both my nephews need surgery when they are 8 too
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Such an informative post I learn so much Thank you for linking to #Thatfridaylinky please come back next week
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Thankyou for your comment!!
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What a gorgeous baby. I learned so much from this post. So important to raise awareness! #sundayphoto
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They are lovely children
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This is such an informative post. My mom had a slight cleft lip which was operated on. I remember specifically being concerned about this through all my pregnancies, as I was told it was hereditary? A great post raising awareness! Thank you for sharing! #globalblogging
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From what I’ve learnt it’s hereditary although very rare in circumstances to have two in the same family at the same time if that makes sense – so I’m my families situation it’s come as a shock
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Science can change so much these days
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It can improve people’s lives so much
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Oh lots of emotions on this post! You did a fantastic job in raising awareness.
I don’t have experience with anyone in my life with this, but I think people should share and not always keep it to themselves.
It starts with one person at a time opening up.
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Thankyou for your comment I appreciate it and it just takes one person to learn I think 😊
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Such a wonderfully informative post! I’ve learnt so much.Thanks for sharing with #TriumphantTales.
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Great way to raise awareness – I had no idea about them really! #CoolMumClub
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Like many of us I have heard of Cleft lips and palates but never really fully understood the,. Thank you for sharing this informative and heartwarming post about it. I learnt something new today.
Thank you for linking to #CoolMumClub
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Thank you for raising awareness of this. My daughter had different complications but I really relate to the worry about how they will fit in and the insensitive comments from other people. It’s great to hear that your nephews are doing so well. #blogcrush
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I used to child mind a little boy who had a cleft lip and palate as a baby, he had it corrected long before coming to me and had no further problems #coilmumclub@_karendennis
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#thesatsesh fascinating and obviously something both close to your heart and well researched. Ive added this to my favs as my friend is due to have a baby with a cleft lip and i think this is written in a really supportive manner, thanks for sharing.
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Aww thankyou, and good luck to your friend. I think the more people talk about things the better and my sister’s baby is due in 3 months it’s going to be hard but with family and support it’ll be ok
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Wow. A real thoughtful post to read. So informative as well as emotive. 💚 #dreamteam
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Such a brilliant post. my friend has a little boy with a cleft lip and palate and lots of associated problems and since then ive learnt so much more about it, but not many others do so this is really helpful #LGRTstumble
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What an informative post. I didn’t realise that the face joins together. Fascinating and great to raise awareness. Thanks so much for linking to #AllSortsofBlogs
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Back with #dreamteam
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Love this post. My friend’s baby was born with a cleft lift – well she is no longer a baby actually 5 years old now. They did the first operation when she was 3 months old and today there is just a little scar by her upper lip and you would never say that she had a cleftie. She is actually featuring as the face of the SMILE campaign here in South Africa. Thanks for the awareness as I think it is so important for people to be informed about this #blogcrush
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This is so interesting and definitely taught me things I didn’t know about clefts. Fascinating to think of the family almost having to get to know a child’s smile all over again. It is so hard when such little ones have to have surgery so I am glad that your family were able to get through all of it #familyfunlinky
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I am clearly too tired for linkies this evening – I meant to put #LRGTstumble!
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What a great post! Spreading awareness is vital. Your little nephew seems adorable. #LGRTStumble
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So important to share information about things like this so people can understand it better. Great post 🙂 #LGRTStumble
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how adorable is your nephew?! so sweet! I didn’t really know much about cleft lips so this was super informative.
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Such a good piece ❤️
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Thankyou!
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Great post. My friend has two boys, both of whom were born with cleft lips and palettes very similar to your nephews. I have to say that the surgery they received on the NHS in Northern Ireland has been fantastic and you can barely tell now. Both of the boys (and their parents) were so massively brave. Pen x #thesatsesh
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It’s amazing the surgery they do!
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Beautiful and informative post. It brought a tear to my eye as having a son with special needs myself I know how hard living with different can be, but we love them just the same .
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They will overcome regardless and definitely still loved
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This is such an informative post, your brother and his family are luck to have your support! Thanks so much for sharing with #Blogstravaganza xx
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Getting onfo out is so important. I know 3 kids who have had the surgery. Such a good fix. ONe would hardly know. #thatsatsesh
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Great post! Very informative and a good way to spread awareness. They are such beautiful babies. 😊 #thesatsesh
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