Jayne’s Story

December 13, 2011

Cleft lip and palate was not something that was new to me, I remember as a child asking my dad how he got the cut on his lip. My dad was born with a cleft lip and palate and had the trademark scar on his upper lip. I remember talking to my grandma and her explaining about all the complications she went through when my dad was a baby, she recalled how much medical practice has come on since then, saying “when your dad had his operation he was under the best surgeon in the country and your dad was one of the first patients to have it done by a new procedure. Your dad’s cleft was really bad, you could see the inside of his nose. It was one of the worst he’d seen, but look at the difference now.”

My dad was equally as open, to us it was my dad – his scar was who he was, it made no difference. As far back as we can remember he was always a joker and always had a laugh, but this is how he got through school. Sadly, he was picked on for his cleft and his coping mechanism was to make fun of himself before the others did. It’s times like this that you realise that children and sometimes adults can be so cruel.

When I found out I was pregnant with my first child, it never even crossed my mind about the possible risk of my unborn child having a cleft lip and/or palate. It was my dad that mentioned about putting it in my notes and bringing the subject up with the midwife. As a first time mum you worry about lots of things, so I was relieved when I spoke to the midwife and she put my mind at ease saying that it wasn’t something that was a problem these days so not to worry and if there was the possibility as they’d more than likely pick it up on the scan. All went fine and I had a healthy baby boy. In fact I went on to have a further two girls and another boy with no complications, all healthy pregnancies and straightforward, easy, natural births.

We were over the moon when I found out I was pregnant in march 2010, I’d had girls to a previous marriage and my husband had a little boy of his own as well as our son Liam but wanted to try for a little girl of his own.

I have to say it was a horrendous pregnancy. I’ve never experienced fatigue and morning sickness like it, and with a small sprinkling of a thyroid disorder you could definitely say I’d felt better! All progressed well, though, and we found out at our 20 week scan we were having a baby boy. We had tried for a girl, but regardless the baby would be loved and cherished just as much. In all I had four scans and everything seemed to be fine. I eventually went into labour at 41+ 9 days. None of my babies were on time, this was earliest any of them had ever been born. It was a very painful, long, drawn-out labour, and let’s face it, my body had had its fair share of making babies by then!

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Our beautiful baby boy Charley John David Coppard was born on the 14th November 2010 at 05.56AM (which was Remembrance Sunday) at Clarendon Wing, Leeds General Infirmary, weighing 8lb 13.5oz.

I remember that relief as he was born as it felt like I’d been pushing for hours. He was born blue with the cord wrapped round his neck twice so they rushed him away as soon as he was born to resuscitate him. It was the longest 60 seconds of our lives, and the feeling of hearing his cry was one I’ll never forget.

It was then that one of the midwives turned round and informed us in a way that made us feel as though it was a really bad thing that our son had been born with a cleft lip. She then went on to bombard us with information that he may have trouble feeding and he’ll have to undergo several operations, not something you want to take in after serious sleep deprivation and a long, trying labour. It was like information overdose and our heads were going to explode! I just remember when she was telling me, I thought to myself ‘what is she on about? Silly woman, cleft is not a major thing!’ They certainly made it sound as though it was something that was really serious.

I finally got to hold my baby boy and take in everything about him counting his fingers and toes, and looking at his little puffed up face thinking his lip looked like they’d forgotten to knit it together when he was in my womb. His lip made him special, and although he was perfect to me I’ll admit I did wonder what other people would think. It’s so sad that society today can make you feel like that.

They took Charley off me and told me they were going to take him to see how he would feed. I have to say, getting a bath after giving birth without your baby there in his cot was the weirdest feeling, and I couldn’t wait to be with him again. Maybe I knew something wasn’t quite right. The midwife took me down to Transitional Care where they were assessing and feeding him I was shocked and upset to find out he couldn’t keep his temperature up and was struggling to feed. They had him under a heater and I was told he had to stay in the nursery to monitor him which upset me even more it was all so overwhelming all I wanted was to hold my baby. The nurses eventually let him be at the side of my bed and luckily he picked up quickly and was out from the heated cot I lay in bed with him the first night cuddling him feeling extremely protective and full of pure, unconditional love. Nobody was going to whisk him away again. He was my baby and I would care for his every need.

The midwife that delivered Charley was fantastic, and I was happy to see her on Series 3 of ‘One Born Every Minute’. She had explained that she had put a call out to the Cleft Team and that a nurse was going to come and see us to explain everything. This was a huge relief for my husband as he’d never come across cleft before, so it’s fair to say he was the one that was the most worried, especially when they had just thrown all this information about operations to him. The cleft nurse Sue came about an hour after and she was absolutely brilliant, she really put our minds at rest. She examined Charley and we were pleased to hear that he only had a cleft lip and that his palate was fine and fully intact, we just had to see how he went on with feeding.

The staff in Transitional Care were angels on earth. They were extremely supportive and helpful, although I did insist on solely caring for him myself. We found that Charley was working really hard when feeding as he wasn’t able to create suction with his mouth. We were meeting our assigned cleft nurse Emma that day, and she was bringing the special squeezy bottles which had special teats that would aid him with feeding. They were brilliant, and we only spent two days in Trans Care because Charley was thriving beyond their expectations.

I couldn’t wait to get home, though I just had the tiniest uneasy feeling about what would people think. I wanted to show off my beautiful baby boy, but what if people said horrible things? I was mad at myself for feeling like that, he was perfect to me and the last thing I wanted was anyone being negative. I think I was more scared of being hurt by someone making me feel as though he was a freak when clearly he wasn’t. How would I react if people stared at him when we were out? In fact it turned out to be completely the opposite – people were brilliant and never once was I made to feel like that.

The day after we came home from hospital, Emma came to visit us to see how we were both getting on. She visited us regularly and would weigh him to make sure he was feeding properly and putting on weight. She was there whenever we needed anything. We knew Charley would have to have the operation at 3 months old to fix his cleft lip, and Emma helped by trying to prepare us for what we were to expect and what the procedure would entail. She even brought a book of photos of other babies with a cleft. The before and after pictures were a massive help. I could hardly believe that they had clefts before the procedure as the results were so fantastic, and I have to say it made me feel much more at ease.

As time went on, Charley continued to thrive. In fact, he fed as though he didn’t have a cleft at all. We found that Nuby bottles were even better than the ones that CLAPA had supplied us with (this was just personal preference, the ones from CLAPA were brilliant but Charley preferred the bigger teats!). They were more finger-friendly and Charley found them easier to feed with. Nearer the operation he had figured out how to feed himself without the aid of using squeezy bottles. His development and the way he adapted to his disability amazed me.

Monday 28th February 2011 was the day we checked into the children’s ward at Leeds General Infirmary for Charley to have his operation. It was the day I had dreaded for months. Our consultant was called Mr Smyth and he was the nicest, friendliest surgeon I’ve ever met, he was so down to earth. He explained what would happen and that Emma would be around to support us during and after.

The whole thing was a nightmare. I know Charley didn’t have a clue, and it was certainly worse for us parents. Charley was brilliant – never moaned, even when his slot was running late and he’d been starved since the early hours. I couldn’t face taking him into the theatre (that was left for dad), but those two hours we waited for the call for us to go to recovery were the longest I’ve ever experienced in my life. Nothing could prepare me for how I was going to feel when I went into recovery, seeing my baby upset and in distress.

I had seen the before and after pictures of other babies, but the feeling of looking at my baby and trying to get my head round the idea that he was my baby even though he looked so different was very strange. Part of it was grief, as I had got so used to the way he looked with his cleft, and now he was such a different looking baby. Seeing the stitches and stent in his nose was upsetting, but I knew it was for his own good. Not even four months old and he was already getting his first cosmetic surgery. Yet again, Charley been the fighter that he is, he was only in hospital for 24 hours after his operation and feeding like a trooper despite having splints on his arms and a stent in his nose. The only complication we came across was when his stent got blocked due to the stent itself aggravating his mucus membranes, the poor little mite was struggling to breathe. If I could give any parent in the same situation some advice it would be to stock up on nasasil or something similar – it’s such a simple thing, but because we did not know we spent four hours in A&E just for them to put some drops down his nose to dissolve the blockage.

All the way through we had the best support with the cleft team, especially from Emma. We didn’t have to take Charley into hospital to have his stitches out, they actually came to our home and did it which made me feel more at ease because at least he didn’t have to be put to sleep again. Once they took the stent and the stitches out he looked different again. I was still coming round to how different he looked, and I was so glad we took lots of pictures before his operation because you tend to forget how they used to look and I wanted to show others and Charley himself when he was older.

Now, Charley is a typical toddler. He never stopped feeding when he was a baby and has never stopped eating to this day – I’m sure he can smell food from 10 miles away! His teeth have not come through too bad and I am hoping he won’t need a bone graft, but I’ll cross that bridge when it comes. To look at him now you wouldn’t think he’d had had a cleft lip, and people don’t even know until I mention it. I wouldn’t have got through it all without the brilliant staff at LGI and the Cleft Team, I just wish I’d had another mummy to talk to who was in the same situation.

I contacted CLAPA because I wanted to offer support for any other mummies in the same situation. It was only when I was looking through a magazine one day and found a cleft charity for children abroad that it made me realise that cleft lip and palate over here was not as talked about or advertised charity-wise, and I would like to do all I can to raise awareness, help and support other parents and when possible raise money for this brilliant charity.

As good as the Cleft Team are, it’s good to have someone to talk to parent-to-parent for extra support, on-hand experience, and advice. I know I had my dad to talk to, but things have changed so much since then. It was also difficult because in his own way my dad blamed himself for Charley being born with a cleft lip, which we all know is silly – you can’t help what you’re born with. With our case of cleft being hereditary and having two generations of our family affected by this, I know there is a chance that any children Charley or even my other children have may be born with a cleft, therefore it important to me to do all I can to help raise awareness so that maybe they won’t feel as lonely and unsure as I did at times. They will know who they can speak to (other than me of course) and where to look for information and support.

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