My Daughter Was Born With A Cleft Palate, And We're OK
It'll all be okay, I promise.
1. I didn’t do anything wrong.
2. Not enough people know what a cleft palate is.
Clefts are the most common facial birth defect in the UK, affecting 1 in 700 babies, but not enough people know what one is.
When people ask after Daisy and I say she has a cleft, the most common response I get is: “Oh! But you can’t tell! Her lip is fine!” And this is the kind of thing that makes lots of parents like me want to facepalm a bit, because cleft palates and cleft lips (which are what most people think of) are not the same thing.
To get scientific on you, they can occur together, or apart, but they present a completely different set of challenges, and it can be quite hard as a new parent to go into those with someone you know, or even a stranger on the street. A cleft lip is where the lip and/or gum fail to fuse together in the womb. Surgery to repair a cleft lip is usually done around the six-month mark, depending on the baby. It’s more obvious, and babies with cleft lips can even go on to breastfeed with the right support. And I know plenty of amazing parents who loved their babies’ smiles with and without their cleft lips.
A cleft palate usually has a few more issues, and while it is hidden away, it can be more challenging, especially when it is part of different syndromes and sequences. It is usually repaired by the time a baby is a year old. And a lot of babies may need speech therapy to help them to learn to speak or produce certain sounds better. I am trying very hard to be as honest and as open as possible about my experiences – whether face-to-face or on my blog – because I want to help raise awareness so more families have access to the support and love that they need, as it can make the world of difference in those early days. You want to hear it from parents. You don’t want to read another web page on what it is and what it means. You want to know if everything will be OK. You want to see babies doing really well and thriving. You need someone to tell you that yes, it really is rubbish, but it will be OK.
I found a lot of support with Daisy’s specialist cleft nurse, who we still see six months on. She was there from the beginning and she comforted me when I cried, she made me believe in myself, and she reassured me that everything would be okay. She is an absolute angel, and if she reads this, I hope she knows how valued she is, and how much she means to our family. If you are a parent of a baby with a cleft, I would definitely recommend looking at the Cleft Lip and Palate Association (CLAPA) website and having a search for some great groups on Facebook. They are like a little ray of light when you are lost in the dark in the early days.
3. Babies with cleft palates can’t suck.
4. It’s possible for them to shoot peas out of their nose.
Or any food for that matter. Because Daisy has a cleft, everything (and I mean everything) can find its way up there when you start weaning. It can be irritating for her, so what she’ll often do is clear her nose with a good sneeze or two. And I know this is typical for a lot of cleft babies.
It doesn’t harm them at all, and they can clear a plate (and yours) just fine. But it was certainly a shock when mid-spoonful I felt a spatter of baby porridge all over my face and had no clue what had happened to me! So, it means that, as well as a bib for your baby, you're better off wearing a rain mac when it’s meal time. And possibly an umbrella.
As for weaning in general, Daisy hasn’t had any issues at all. I mean, the food-coming-out-of-your-nose thing isn’t nice, but the stronger she gets, the better she is at managing it. She’s almost 7 months now and seems to eat more than my 4-year-old sometimes!
5. Cleft babies make the cutest little noises.
6. Everything will be okay.
If you are reading this and your baby has just been diagnosed with a cleft palate, and you are wondering what that means, then firstly, I wish I could give you a hug and say this to your face.
When you first learn that your baby has a cleft palate, your world stops for a moment. And you wonder what that will mean. Will my baby be different? Will she be bullied? Will he struggle? What happens next? And while every baby is different, I promise you, it does get better. There will be challenges, of course there will, but time goes so quickly. So don’t let this tiny difference take away those baby days, and those first moments away from you.
We have still had first smiles, first laughs. We have still seen Daisy roll over and sit up. We have still done baby groups. We have still been swimming. We have been on holiday. And we are the proud parents of one amazing little girl. Yes, we have her surgery to get through early next year, and I’m nervous, terrified, and anxious. But also excited for her and what it will mean for her and her future. I know she will be okay.
And I know we will be okay too. Which brings me on to my final point. How do I know all of this?