My Daughter Was Born With A Cleft Palate, And We’re OK


1. I didn’t
do anything wrong.

I didn’t do anything wrong.

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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.

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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.

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3. Babies
with cleft palates can’t suck.

Babies with cleft palates can’t suck.

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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.

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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!

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5. Cleft
babies make the cutest little noises.

Cleft babies make the cutest little noises.

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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.

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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?

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

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

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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.

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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.

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