Cleft lip and palate- My Story

24th February 2012


Hi, I'm Fi, and I have just run a half marathon with my sister-in-law to raise money for the Cambridge branch of Cleft Lip and Palate Association (CLAPA). We completed the run on 30 October 2011 in 2 hours and 30 minutes. My son, Henry, who is nearly two, joined us for the last twenty metres and ran over the finish line with us, which was wonderful. We've raised just over £500.

My husband, Sam, was born with a bilateral cleft lip and palate 31 years ago, and when we started to think about having a family, we went for genetic counselling as we thought our chance of a cleft lip and palate affected baby might be raised given the family link. It was confirmed that we had a one in 25 chance, as opposed to one in 700 where there is no family history. At our 20 week scan, in June 2009, we were looking forward to seeing our baby again and finding out the sex. The sonographer confirmed that we were having a boy, and that he did have a cleft. Immediately, Lisa, one of the cleft nurses came to talk to us. Whilst Sam had had experience of cleft lip and palate and the issues and surgeries  surrounding it, albeit twenty years ago, I really didn't know much about it. Although I had known we had an increased chance, it was still a shock. Lisa was able to reassure us and to explain the next steps, without overwhelming us. We went home, and Sam's mum came over, and it was good to talk to someone who had been through it all before, and knew how we were feeling.

Henry was born in Nov 2009. Sue Burton, Lead Clinical Nurse Specialist, came to see us a few hours after Henry was born and examined him, and confirmed a unilateral, right sided cleft lip. He was, quite simply, the most gorgeous thing I'd ever seen. All that worry about whether I would not feel maternal towards him, or even frightened by his cleft, had been unnecessary. At a whopping 9lb 8oz, he was a very hungry boy and I was able to breastfeed him successfully, although he did take a lot of air in on his cleft side which made him a bit colicy. The cleft team lent me a breast pump, which was an amazing help as Henry preferred to feed cleft side down to stop the air getting in, so I would express on the other side, and then Sam could feed him too with a bottle.

Henry was due to have his lip repair operation at the start of February 2010, but as he was putting weight on so well, it was delayed until June 2010. Up until the operation, Niamh (our cleft nurse) came to see us every month, to check Henry was doing well and to ensure we were prepared for the operation. She provided us with tremendous support, and was always at the end of the phone if I needed to query anything or needed advice. Henry had his lip repair in June 2010, and we were in hospital for three days. We went down to see Henry put under and to hold his hand and talk to him whilst the mask was held to his nose and mouth. I won't lie, it was one of the hardest moments of my life! We then had about three hours to get through whilst our consultant plastic surgeon and BAPRAS member Mr Tariq Ahmad did his work. Just before lunchtime our bleeper went and we rushed to Recovery to get our little chap.  He was quite out of it, which I found upsetting, but the nurses reassured us he would perk up soon. Henry did just that and six hours later was sat up eating yoghurt. I was utterly amazed by the speed with which he recovered and healed, and the bravery he showed, even at six months old. They comment at nursery now that he doesn't seem bothered by bumps or grazes and how brave he is, and I nod and say he certainly is!

 Following the operation we had a tricky fortnight when Henry wouldn't feed from me, or take a bottle, so we syringed milk in, ml by ml. It was a hot summer and I was very worried about dehydration, but I kept reassuring myself that if he was hungry he would feed, and after two weeks he did. Going on at the same time as this feeding worry, was an internal wrangle that I couldn't associate my little gummy Henry, with this newly repaired child. He'd changed so much, not just his lip but his entire face shape. Combined with the fact that he'd been such a milk monster before the operation, and after wouldn't feed at all, I felt they'd swapped my child in the operating theatre.  And I felt dreadful for feeling like it. I really struggled with the feelings of rejection towards him that I had, especially as I hadn't heard that this might happen. Over the fortnight though, the feelings faded and I got used to Henry's new face, and realised that he was still my Henry of course and since then we haven't looked back! We meticulously rubbed in the Dermatix, and now, 18 months on, you can barely see his scar. We'll be going back to the cleft team in a year or two to see if Henry's lip needs any revision, but I am confident that if he does that he is in the best possible hands and that we'll be supported crossing that bridge by the cleft team.

We decided to get involved with the CLAPA Cambridge branch when we found out Henry had a cleft. Our way of coping with it was to try and do a positive thing, like fundraising; so Sam did a half marathon and raised over £4k, which was a great achievement. Since then we've done cake sales, and another half marathon, and now we're wondering what our next challenge will be!
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