Henry with his mum and dad after his operation
What is cleft lip and/or palate?
- During early pregnancy separate areas of the face develop individually and then join up. If some parts don’t join properly the result is a cleft, the type and severity of which can vary.
- The condition affects one in every 700 babies born in the UK, that’s around 1,000 babies per year.
- About 75% of these cases are diagnosed at the 18-22 week foetal anomaly scan.
- Sometimes a baby with a cleft palate may have a small lower jaw (or mandible) and a few babies with this combination may have difficulties with breathing, this is called Pierre Robin Sequence.
- A cleft lip is a condition that creates an opening in the upper lip between the mouth and nose. It looks as though there’s a split in the lip. It can range from a slight notch in the coloured portion of the lip to complete separation in one or both sides of the lip extending up and into the nose.
- A cleft on one side is known as a unilateral cleft. If a cleft occurs both sides it’s a bilateral cleft.
- Sometimes there can be a cleft in the gum, too, which can range from a small notch, to a complete division of the gum into separate parts.
- A cleft palate occurs when the roof of the mouth hasn’t joined completely. It can range from just an opening at the back of the soft palate to a nearly complete separation of the roof of the mouth (soft and hard palate).
Fiona Sanders-Hewett, 29, is mum to Henry, 18 months, who was born with a cleft lip.
“The moment your baby arrives you’re desperate to see how he or she looks. You listen for the magic cry that says your baby’s breathing, and then you want to see that little face and count fingers and toes. It was the same for me when my son Henry was born, except for one extra thing. I was yearning to see his face as I knew he had a cleft lip, where the skin and muscle hadn’t fused together completely.
“My husband Sam was born with a cleft lip and palate, and he’s had numerous operations over the years to correct it. So when we decided to start a family we knew it’d be a risk that our baby could be born with the same condition. In January 2009, when we decided to start trying for a family, we went for genetic counselling, and were told there was a 1 in 25 chance that our child could have a cleft. It seemed such strong odds to me. ‘You must focus on the 24 in 25 chance of everything being OK,’ the consultant told me.
Trying to be positive, I went to my 20-week scan. But Henry was the 1 in 25, and they diagnosed cleft lip. We didn’t know the extent of it at this stage. All we could do was wait for more scans and see him when he was born.
“Henry arrived in November 2009, 14 days overdue. I’d been induced and he was eventually born using forceps. So before I even thought about the cleft lip and how it’d look, I was more concerned that he’d arrive safely. All 9lb 8oz of him gave a massive wail, and I was so relieved. The first thing I did was count his fingers and toes. Then I looked at his little face. As he cried, his mouth looked big and gummy – the cutest thing I’d ever seen. I’d been so worried I wouldn’t think he was cute, but as we had our first skin-to-skin contact I was in paradise.
“Henry’s condition was diagnosed as a unilateral cleft lip, whereas Sam was born with bilateral cleft lip and palate, which was more severe and required more surgery. I knew we were lucky that Henry was healthy, happy, and that he could’ve had a far more severe cleft.
“At six months, Henry had an operation to fuse the skin and muscles together. He needed a general anaesthetic and I was worried about him having to go under. We’d had to wean him early, as we were advised that after the op he’d actually cope better with solids than purée. I needn’t have worried, as just a few hours afterwards he was sitting up eating yoghurt. It just goes to show how resilient children can be.
What I hadn’t prepared myself for was that he’d look different to the little face I knew as my Henry. It actually took a while to get used to his new appearance, and I was pleased we’d taken plenty of pre-op pics so we’d remember how he looked in those first six months.
Support and the future
“We’d joined CLAPA (The Cleft Lip and Palate Association) before Henry was born, and raised money for them by running a half-marathon. Then, once he arrived, we joined in with local groups and meeting other parents locally. We’re lucky in a way that Sam has been through this as he’ll be able to support Henry first-hand with any questions he gets from people.
“Sam was bullied for his appearance and I just hope Henry will be luckier. All we can do is show him we love him as he is, and hope others follow suit. Some people stare, and some have even asked me if I cut his face. But I’d much rather people ask questions so we can share our story.
“Henry will probably need another operation as the years go by, but a recent check-up showed that he has no problems with his hearing, which can happen, so we’re really pleased. And like any other family, we’re just getting on with loving our son the way he is.”
CLAPA – Cleft Lip and Palate Association
The Cleft Lip and Palate Association is the only UK-wide voluntary organisation specifically helping those affected by cleft lip and/or palate.
The organisation provides support for new parents, and for people with the condition and their families, from infancy through to adulthood. Branches are run by people who’ve benefited from the organisation, often working in partnership with local health professionals.
For more info email firstname.lastname@example.org, go to www.clapa.com, call 020 7833 4883 or visit their Facebook page.