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.

Charlotte Taylor

My second child, Daisy, was born in April 2016 after a really brilliant labour. But when she wouldn’t feed, after a couple of hours of trying, the midwife checked her over and discovered her cleft palate. The first thing I did was burst into tears, while looking down at her squashed and pink little face. The next thing I did was blame myself.

I was heartbroken. I was confused. I spent the following hours wondering why this had happened to her, to us. And why we didn’t know about it. And feeling heavy with guilt. So why does it happen? A question I asked myself often, even though I knew the answer already. Yes, cleft palates can be caused by smoking and drinking during pregnancy, but a lot of the time, as with our case, they can be due to genetics, or happen completely at random.

A cleft palate occurs in the eighth week of pregnancy when the two halves of the palate fail to form together as one. So even before your 12-week scan, your baby may have a cleft palate and you probably won’t know until they're born. Frustratingly for parents, cleft palates are very difficult to pick up on scans (unlike cleft lips, which are much clearer to see). As parents, if something happens to your baby, whether they are newborns, or older, you blame yourself. And I know a lot of mums will ask, when their baby is diagnosed with a cleft palate: “Was it something I did?”

Never ask parents what they did wrong, or whose fault it was. Tell them "congratulations" and that their baby is beautiful, and offer your support if they should need it.

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.

Charlotte Taylor

Before Daisy was born, I never really considered that a cleft palate would mean that I couldn’t just buy any brand of bottle from the supermarket, or breastfeed like I had planned to. A cleft palate means there is no way for babies to create a vacuum in their mouths. So while my little girl can do the suckle motion (and loves her dummy, which she holds in her mouth herself now), she needs specialist bottles to be able to feed. I remember being left with leaflets and a firm “she won’t be able to breastfeed” and I was heartbroken.

I had breastfed my first child, Bill, for 18 months and just assumed I’d do it again. But when your baby is born a little differently, and even spends time in a neonatal intensive care unit, you realise it doesn’t matter. In the end, I expressed my milk for three months, and we switched to formula when I grew too exhausted to continue. Fed is best. And happy mama means happy baby, after all.

I remember calling up a stockist of specialist bottles from my hospital cubicle in a daze. I didn’t understand how they worked or what they did differently. But you soon learn. There are a few different types – the most common is one that lets you squeeze milk into their mouths. And another, which Daisy prefers, has a special valve that means she can drink without my help, which I find much nicer too. There are more parts to clean and sterilise, and they aren’t easy to buy – you have to call up and order them – but eventually it just becomes normal routine.

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.

Charlotte Taylor

All babies do, to be fair. But a cleft palate or a cleft lip is part of your baby. And you learn to love everything about them. Think of it this way – if I asked you if I could change part of your baby or your child right now, you’d hate the idea. And even though cleft palates present challenges, it’s the same for me. Daisy has this little noise that she makes by pushing air through her cleft and she sounds, in all honesty, like a little pig snuffling around. She also sounds more nasal, too. But that’s my baby. That’s what she sounds like. It’s her voice. And when her repair is done, along with subsequent speech therapy, that is likely to change. And that’s actually quite hard to process.

Her surgery is due in February 2017. We don’t have the exact date yet, but we are likely to find out in the New Year. The surgery can take from two to six hours and usually only requires one overnight stay in hospital. I’ve already had her some special hospital pyjamas and a gown made by the Pyjama Fairies (a charity that makes gowns for children about to undergo surgery) so she can have something from home with her when she goes in. I keep them at the bottom of the very bottom drawer of her chest of drawers, and it hurts to look at them right now. I know she will be in them soon enough and the final part of her journey will take place, which is exciting and terrifying at the same time. A bit like that feeling before you get on a rollercoaster, but much more intense.

So yes, while having a cleft palate has presented some challenges for us as a family, it also makes our tiny girl who she is. And that also means that some parts of her we will have to say goodbye to one day, which is a strange feeling to get your head around.

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?

7. The apple doesn’t fall far from the tree sometimes.

Charlotte Taylor

In the first point earlier, I mentioned the fact that I blamed myself. And there was actually a reason for that. But it was never because of anything I did. It was because of who I am. I was actually born with non-ocular Stickler syndrome, which can include a series of defects known as Pierre Robin sequence. One of those defects is a cleft palate. Yes, I was once a cleft baby too. I knew that there was a 50% chance I could pass this on to my own children, but it was never picked up on scans, and my first child was born with no issues whatsoever, so I assumed everything would be okay.

I knew the "risks", but I would never change Daisy’s outcome. Because regretting her would be regretting one of the best things that has ever happened to me, and also regretting who I am. Daisy had a few struggles initially, just like I did, because of our syndrome. She had a nasopharyngeal airway (a tube inserted down one nostril to stabilise her airway) for three months, and a nasogastric tube (a feeding tube) for four and a half months.

And now, at 6 months old, she’s doing amazingly. You’d almost forget it ever happened. But one thing I want to say is that you won’t ever forget all of this. You won’t forget the challenges. And the fear. And the worries. But it doesn’t last forever. And the biggest thing, at least where I was concerned, is that your baby won’t remember much of it at all. They really won’t. I never grew up feeling different. I did well at school. I can speak perfectly fine (I can even sing!). I was never bullied because of it. And it has never held me back. And the bits they do remember will make them who they are.

Having a baby with a cleft palate isn’t the end, it’s the beginning of raising a strong, brilliant, and courageous little person who will turn your world upside down for all the right reasons. It’ll all be okay. I promise. And for those days where it isn’t okay – at the start of your journey, or the days where you get flashbacks, or harder times – you aren’t alone. And you can do this. And they can do this.

If you would like to know more about cleft palates, or would like more support as a parent of a baby with a cleft, then I can’t recommend the Cleft Lip and Palate Association enough. I’m also more than happy for you to message me too.