Romans Story – Cleft Lip & Palate Awareness Week 2017

My friends Son was born with a Cleft Palate it is something I was almost completely ignorant of . 

Here he shares with us their journey, in what is my blogs first guest post. 

Nothing more exciting than the knowledge that your first child is on the way, I still remember the feeling especially after obstacles that have been put in our way getting to this point. Those challenges won’t be forgot. So, when I knew I was going to be a Father I was like this is going to be a fairytale full of joy and amazement and it was.
A year and a bit ago Roman aka Rara arrived into this world which was earlier than expected, three weeks earlier and he has continued to do everything on an early clock waking up. So, after all the excitement and the fairy-tale birth, we came up against feeding challenges which landed Roman in NICU, basically this when ‘sh*t hits the fan’. Myself and his mum were struggling to feed him which wasn’t fun and he wasn’t gaining weight. The Nurses were confounded as to what was going on, so day 5 and a strong-willed Nurse basically said ‘I am good at feeding babies this is not right, I am getting him referred’. 
All I can say is fast forward to one day after the nurse’s comments and we discover he was born with Cleft Palate which isn’t visual from the outside unlike a Cleft Lip. But this was found because of the Nurses strong will and she insisted he was checked out by a consultant who noticed it when he was screaming for milk. Roman didn’t do anything by the book because he was such a quiet baby for the first few days that we never even had to consider his mouth…even the Nurses didn’t find this in the immediate days after his birth.
Having a baby with a Cleft Palate has created a variety of issues and obstacles still ongoing even though he had an operation on Valentines day to successfully correct it. It’s times like this that I’ve questioned how vain society is and whether I would have so many photos/selfies with him if he had a cleft lip but he’s beautiful inside and I bloody would because everything we go through makes us who we are. In short, vanity is overrated and it took his birth to teach me that. 
He will still need help with things that I certainly considered normal such as speech and language but we are getting there. He can eat loads and make lots of noise which is a blessing. But the road is long and the journey hard. It certainly isn’t the easiest thing to eloquently put in words but before his birth in January, I didn’t even know what terms were offensive for Cleft lip people or even that there was a Cleft Lip and a Cleft Palate, so it has taught me so much. In the next year there will be a big charity event (Marathon I hear you say) that someone close to me will be preparing for next year…Romans mother his eternal protector and warrior.
Here are some Statistics taken from WWW.CLAPA.COM, Cleft Lip And Palate Association:
Around 15% of clefts are caused by syndromes, where one or more symptoms occur all together. If a syndrome is involved, the chances of passing on a cleft is all down to the heritability of the syndrome, which in some cases can be as high as 50%.
1/700 people will be born with a cleft lip and/or palate, though some statistics put it is closer to 1/600. This is around 0.14% of the population

Where there is no family history and the cleft was not caused by a syndrome or condition, the chances of having a child with a cleft is around 0.14%, or 1/700.

If neither parent has a cleft, but they have one child with a cleft, the chance of another child also having a cleft is 2-8%, and this goes up the more children with a cleft they have.

If someone else in the family (such as an uncle or aunt) also has a cleft, this goes up to 10-12 percent. 

Leave a Reply