WHAT IT'S LIKE WHEN YOUR BABY NEEDS CLEFT PALATE SURGERY

By Kerry Dolan                                                                        

I am one of the approximately 1,200 babies that are born with a bilateral cleft lip and cleft palate in the UK every year. 

It hasn’t altered my life in any way, other than having routine surgery when I was tiny. something that did my life was when my daughter was also born with a cleft lip and palate.

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The Science Bit

In the first few weeks of pregnancy, the various parts of a baby’s face develop individually and then join together.  Sometimes the parts don’t join properly and the baby is born with a cleft.  A cleft can be a tiny notch of the lip to a whole separation of the upper lip which can extend up into the nose.  It can affect one side of the lip (unilateral) or both sides (bilateral). 

A cleft lip can also be accompanied by a cleft in the palate too, a gap in the roof of the mouth, sometimes a small hole or sometimes a much wider channel that separates the gum into two parts.  It may sound horrific, but in reality, it isn’t. 

A cleft lip and / or palate is among the most common cranio-facial abnormalities and thanks to amazing surgeons, can be repaired quickly and relatively simply allowing cleft babies to live perfectly normal lives.

What Causes It?

No one knows what causes a cleft to happen.  Research suggests that it’s often caused by a combination of genetic and environmental factors.  I’m not exactly sure what this means but I seriously doubt it’s because it was raining outside when baby was conceived.

Genetics are a huge minefield that I’m not qualified to go into, but in my family, one of my great aunt’s daughters was born with a cleft so I assume that’s where I’d inherited mine. 

I was surprised when I was told at my 20-week scan that my daughter would also be born with a cleft as I thought it might skip a generation or two, but in all honesty, I realised who better than me to guide and support my new little daughter with a cleft?

Whatever the cause may be, I was also assured that a cleft palate was very unlikely to have been caused by something I did or didn’t do throughout my pregnancy. 

Being told there is anything wrong with your unborn baby is worrying and a shock and the guilt starts setting in immediately.  Was it that sneaky glass of wine? Or the late nights?  Or the time when I took the paracetamol for the headache?  It’s none of those. 

A cleft occurring is connected to your genes and there is nothing you can do to stop it happening.  I was told at my 20 week scan, so there was plenty of time to obtain the support I needed. 

If you’ve been told your baby will be born with a cleft lip and/or palate, your best option is to read about it as much as you can, and then settle down and prepare to welcome your baby like all other expectant mothers.

A Repair Job

Thankfully in the UK, our wonderful NHS have specialist cleft teams up and down the country.  They will squirrel you out before baby arrives and offer you plenty of advice and information on what will happen to repair the baby’s cleft when the time comes.  A cleft lip repair is a surgical procedure which usually happens when the baby is around three months old. 

I remember when my daughter was born I’d been feeling anxious about how I would feel, but I needn’t have worried.  Her little face looked even cuter with a gap, and when she finally smiled at six weeks it made her smile even wider. 

She was no different to other babies, apart from having to use special squeezy bottles to feed her.  She had a sucking reflex, but because of the hole in her palate her drinking was never rewarded with milk.  We developed a routine where she’d suck and I’d squeeze the milk into her mouth.  It was a learning curve for both of us. Sometimes I’d worry I was choking her and sometimes the 3 am feed would mean I’d forget to squeeze as regularly as she wanted and we’d have an angry, hungry baby on our hands. 

We grew to love her cleft and the night before surgery, my husband and I questioned if we wanted her to change.  I was informed this was perfectly normal.  Nonetheless it was a tough time.  Taking our tiny baby for surgery was probably one of the most difficult things we have ever done.  However, once the operation was over she was home within a few days and gulping down her feeds as usual.  Within six weeks you could barely tell she’d even had any surgery.

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More Surgery

Unfortunately, it didn’t end there.  The operation to mend a cleft lip is first, and three months later a further operation is required for cleft palate repair.  Having been through the process already it should have felt easier, but at six months old she was a bright and happy baby and I was terrified of taking her into hospital again. 

The second operation to repair her palate was slightly longer, but a complete success.  Understandably, she woke up from the operation grumpy and demanding milk.  I’d gotten used to feeding her with the special squeezy bottles, but the first time I put the bottle into her mouth, cradling her in the recovery room, she latched onto it with an iron grip I’ll never forget.  It was amazing.

Post-surgery, she was sore and the nurses advised we feed her mashed wet foods to avoid her relying on milk feeds and putting too much stress on the scar.   We spent several nights feeding her mashed banana, which the nurses found funny, but she loved it.  A few days later she was smiling again and she came back home.

My daughter has just turned 14 years old.  She is happy, doing well at school and without wanting to sound like an over protective cringeworthy parent, turning into a little beauty.  Her cleft hasn’t held her back and neither has mine.  You can barely tell she has ever had surgery.  Thankfully, scars, like scary birth stories, do fade in time.  She will need orthodontic work on her teeth but how many teenagers do you know that don’t have braces?  They’re almost a fashion accessory now.

Famous people with cleft lips include; Joaquin Phoenix, born with a microform cleft lip which presents itself as a notch, groove or scar above the lip, known as the least serious form of a cleft.  Cheech & Chong actor Cheech Marin was born with a cleft lip and had it repaired with surgery.  Actor Thomas Burke, author Tim Lott, Pussycat Dolls singer Carmit Bachar and football star Ljubo Milicevic were all born with a cleft lip too. 

A bit closer to home is Carol Vorderman, whose brother, Anton was born with a cleft lip and palate and she is now patron for the charity CLAPA.  These celebrities have carved out their own successful careers proving that their clefts didn’t hold them back one bit. 

Where To Go For More Information + Support

CLAPA – Cleft Lip and Palate Association www.clapa.com is an excellent source of info for parents and people with clefts, whether you are young or old. You can also connect with them on Facebook and Twitter.