Cleft lip and palate awareness.

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!

This is Faith when she was first born.

“Shes now 4 and a half and a big sister to a non cleft affected little girl as well. We found out at my 20 week scan that she had a cleft lip and most probably palate, Nick the sonographer had suspected seeing her tongue up her nose – so was a dead giveaway and we were put into the little room at Grimsby with all the miscarriage posters on the wall and we were fearing the worst. When they finally got to us, it seemed like forever, and told us it was a cleft the relief was actually amazing at first, just thought ” oh that’s just cosmetic we can look at that later” – we weren’t going to loose our precious baby. As it all sank in though we went through the same as everyone else, why us? Why our baby? What had we done wrong? What could we have done to change it? What will people think, will we love her? So many more questions and worries that almost spoiled the whole pregnancy, except we turned it into a positive and we started putting photos on facebook for everyone, building awareness as we found out what each day brought. We think we were actually able to help a few other families in time come to terms with their scan predictions also.
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!”

 

They also made faith a video which reached thousands of people and is beautiful – https://www.youtube.com/watch?feature=share&v=agkowfJHEdE&app=desktop

---

 

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.

---

Find out more about the causes of cleft lip and palate.

Smile train.org.uk