Last Saturday, Rawrie had the second of what is likely to be three operations on his cleft lip and palate. Anyone who shares our situation of being absolutely ignorant of cleft babies until it popped up in our lives – in our case, on our 20-week antenatal scan – CLAPA is an amazing website to go to and get all the deets and the cuteness and the special smiles. In a very vague nutshell, cleft babies are absolutely no different to other babies, their mouths just decided to not come together in the womb, so they are less likely to breast feed easily than other babies. They have more chance of having hearing, dental and speech problems – problems that, in the grand context of things, all kids can get – and they have the biggest smiles which you cannot resist. The causes are an absolute mystery (sometimes genetics, sometimes a completely unknown reason) but there’s amazing work done by the Cleft Collective project to try and shed some light on that area of things.
I am really lucky that I have a close friend who was born a cleft baby and is perfectly fine as an adult, so I didn’t understand why people reacted so negatively when we found out. Clefts have lots of different versions and degrees, but most cleft babies have absolutely no problems doing the basics of life, feeding and growing and being happy. I also feel like cleft babies are way too common in the UK – 1 in 700 babies are born with one – for this country to lack a good understanding of it.
The South Thames Cleft Service has all the people we could ever want for Rawrie’s childhood if he happens to need it – nurse, surgeon, dentist, speech therapist. They have all known Rawrie since he was born and are his extended friends. Literally, he just parades around the centre and says hello to everyone, they are all his chums. I cross fingers that they all remain his friends as he grows up. I’m also pretty sure there are more people in the team but the best thing about cleft teams is that they don’t bombard you and worry you until the very moment when you need something new, then they are on the case and make you feel so supported. We just love them.
I will say though, and this is the only black cloud to be seen when your child is a baby, the operations are tough. Don’t get me wrong, in the context of other surgical procedures a cleft baby is in and out of pre-op and the theatre itself in about four hours, which is real efficient. Our surgeon Louisa works some real magic and is a lovely lady. It’s the first twelve hours that kills a little. Baby’s mouth is tender, super drowsy on morphine, and really really unhappy. There are tears. There is tiredness. There are tired tears. There is the sleeping for about 30 minutes and the rest of the night you are in the ward with your little one sleeping on you, waiting for the next round of antibiotics and trying to work out if you can move at all without getting tangled in your baby’s medical tubes.
Oh Evelina London, you and all the staff within you made these two ops soooo bearable. Giving us sugary tea, making our drugged-up baby smile and follow you around the ward, going above and beyond making us feel as much at home as possible, all while tending to several other kids in one night shift. These people never rest, they just seem to have boundless energy and love to give. I thank the universe every day for them all.
Technically Rawrie’s cleft is no more thanks to his two operations, but it’s very much part of his identity and we want to be loud and proud about it. It’s just a little difficult dealing with the words that people use. “Defect” and “obvious visual impact” spring to mind and they do stick in the head guys if you’re not careful with the prejudice and the vocabulary you use. It is a real pet hate for me when people try and explain my child to me (anyone else feel like that??). At the end of the day, Rawrie is growing and exploring and smiling and his cleft has not hindered these things, they have been part of it.
To anyone who knows a parent who has just been blessed with a cleft baby (I do mean blessed, clefts are adorable!), please share this post so they get a bit less gloom and doom! Please please please, ok thanks very much!