Sue Maughan’s third child Dan, now eight, was born with a cleft lip and palate. Sue, 46, explains what happened and how she became involved with the international charity Smile Train. ‘At my 20-week scan, I was told my baby would be born with a cleft lip and palate. There was no history of clefts in my family and my previous two pregnancies had been fine.

‘I felt nervous and afraid, but we were put in touch with the specialist cleft lip and palate service at Great Ormond Street Hospital for Children, and their support – both practical and emotional – kicked in immediately.

‘I learned the main difficulty would be feeding. A cleft lip means that babies cannot latch on to the breast, and with a cleft palate the milk tends to come out of the nose. I found special feeding bottles online – they have soft, squeezy sides so you can squirt the milk directly to the back of the throat.

‘Dan was born with bilateral [two] splits in his lip. His palate [roof of his mouth] was split. He had a one-off operation to repair his lip at three months old. A cleft lip means there is no support for the cartilage in the nose, so the left side of Dan’s nose was reshaped at the same time.

‘Three months later, his palate was repaired. A side effect When a smile can transform a life of cleft lip and palate is an increased risk of glue ear [when fluid fills the middle ear], so Dan also had to have grommets fitted. His hearing is slightly affected – worse when he has a cold – but he doesn’t need to use aids.

‘Because Dan’s soft palate was too short, the air tended to go through his nose when he spoke, making his voice sound nasal. But last November he had a buccinator flap operation, where some of the cheek lining is inserted into the soft palate to make it longer. His speech has improved a lot since then.

‘Dan will have one more operation this year to insert a piece of bone from his hip into the top of his gum line, which still has a little break. This should help his teeth to grow more evenly.

‘We didn’t have to think about finding help; it just happened. But because of Dan we became much more aware of charities like Smile Train (www.smiletrain.org.uk) that look after children in the developing world who have the same condition but little access to treatment. Smile Train treats anyone from infants to the elderly, and trains local doctors to carry out corrective surgery.

‘I started fundraising for Smile Train in 2012 and have visited Tanzania [one of the countries where they provide free cleft surgery] twice. Many people there believe that mothers and babies with cleft lips are cursed. In the worst cases, newborns are killed or abandoned after birth, and mothers are often rejected by their families.

‘The babies have difficulty breathing, eating and speaking. As the children age, the gap gets bigger and the problems get worse. They usually can’t work or marry. Repairing a cleft lip and/or palate costs Smile Train just £150 and will transform the patient’s future.’

• Cleft Lip and Palate Association, www.clapa.com

CLEFT FACTS

● Around one baby in 700 worldwide is born with a cleft lip and/or palate. In the UK, the condition affects over 1,100 babies annually.

● In early pregnancy, parts of a baby’s face develop separately. If they do not join properly, the baby is born with a cleft.

● Research suggests the cause is a combination of genetic and environmental factors, which are not predictable or preventable.

 

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