About one in every 700 babies in this country is born with a cleft lip and/or palate. The word 'cleft' simply means 'split' or 'separation'. During early pregnancy, separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary.
Although we don't know why, the condition occurs more often in boys, and there is a slightly higher incidence in Asian children. The condition can also be hereditary, but in most cases it occurs randomly with no obvious contributing factors.
A cleft lip is usually repaired surgically by the time a baby is two to three months old, and a cleft palate is usually repaired when the baby is around six to nine months old. The next major operation is when children are eight or nine years old. An alveolar bone graft may be necessary for a cleft of the gum. This provides a platform for adult teeth to come through. After this the child may need further treatment or operations at 16 to 18 years old for jaw revisions and sometimes cosmetic surgery.
Treatment is provided by a cleft lip and palate team. These are made up of specialists working together to ensure the best possible treatment and outcomes are achieved. The teams may include plastic surgeons, speech and language therapists, maxillofacial surgeons, orthodontists, audiologists and psychologists and specialist cleft nurses.
Feeding problems
Babies with only a cleft lip or with just a narrow gap in the palate can usually manage to breastfeed, but most clefts of the palate make breastfeeding impossible. Expressed or formula milk can be fed using a special soft squeezable feeding bottle and a shaped orthodontic teat, which allows the flow of milk to be regulated.
Sipper spouts are also available to aid the transition from bottle to cup. Parents will be able to supply whatever is needed to help nursery staff.
Older children who have had corrective surgery should be able to eat normally, but may eat more slowly and carefully than others.
Speech and language development
A cleft palate, even after surgery, is likely to cause some degree of speaking difficulty or delay, although good speech should develop over time. A repaired palate can make it harder to pronounce certain sounds clearly and may result in a nasal tone. Such children will be referred to a speech and language specialist, and may need an additional operation to reduce the amount of air going into the nose.
When a child is having trouble making themselves understood, they may resort to a more tactile or aggressive form of communication to gain attention, so it is important to watch out for any signs of pushing, fighting, biting and so on.
Hearing difficulties
Because the ears, nose and throat are so closely connected, clefts often lead to middle-ear infections, catarrh or 'glue ear'. Because good hearing is necessary for concentration and to aid speech development, the child's hearing is likely to be closely monitored throughout infancy, and the insertion of grommets or the use of hearing aids may be necessary.
Being aware of any hearing reduction problems should enable nursery staff to hold the child's attention by speaking more clearly and face to face, and by sitting the child at the front for story times.
Teeth
Teeth often emerge a little later than normal in the cleft palate child, and teeth which would usually appear near to the site of the cleft may be missing, twisted or misshapen. It is possible that extra teeth may appear or that the upper and lower teeth do not meet properly when biting together.
Again, such a child will receive regular monitoring and orthodontic treatment involving retainers and fixed braces. Oral hygiene is especially important so the child may also want to brush his teeth after snacks or meals.
Confidence
Perhaps the most difficult thing for both child and parents to deal with is the appearance of the face. The nose may look squashed or lop-sided, the lips and teeth not quite straight, and surgery is likely to leave scars. The child's voice may sound different from those of other children and they may find that they are not easily understood.
Feeling that they are different from other children can lead to embarrassment, shyness, low confidence and self-esteem, a reluctance to speak up in class, and the possibility of being teased or bullied. Prolonged and frequent absences for hospital and dental visits can make a child feel left out and can affect the making of friendships adversely.
It is, therefore, important to explain the child's condition and to discuss feelings with all the children in the nursery, to promote a positive self-image and to encourage the child to participate as fully as possible in nursery life. A regular catch-up chat with the parents should help to keep everyone informed and provide the opportunity to discuss any behavioural or developmental concerns that nursery staff may have.
CASE STUDY: HEATHER AND AMY POWNALL
I found out that I was expecting triplets early in my pregnancy, which was a shock. At all the scans they were able to determine that we were having two boys, but couldn't tell the sex of the third baby.
At 29 weeks, my beloved Dad collapsed with an inoperable brain tumour, but hung on until the week after the triplets were born. I was devastated, but I think this terrible tragedy helped me to put what was to follow into perspective.
The triplets were delivered by caesarean at 35 weeks. Amy was the first baby out and even in that instant I knew something was wrong. Harry came next and finally Jack.
They prepared the babies and brought Harry over first, then came Amy, along with the words, 'Here's the deformed one, as you know.' We didn't know; nothing had ever been picked up on the scans.
Andy, my husband, looked as though he was about to collapse, but I looked at my beautiful daughter and thought she was just perfect. A girl at school had a brother with a hare lip, as it was called in those days, and he looked good, and compared to my Dad dying, this was okay, and I knew Amy could be "fixed".
The triplets stayed in the special care baby unit for two weeks, where Amy had her first impressions for her plastic plate, and then we were home, one big happy family, with their older brother John, aged two.
Amy had her first operation when she was four months old - we had to wait until she was 9.5lb (about 3.8kg) and her birth weight had been only 3lb 12oz (1.5kg).
The operation was a success thanks to our wonderful surgeon, Brian Sommerlad, although I must confess to missing her cleft. She had such a cute little smile, and she sounded very different after the first operation, too.
The next operation, the palate repair, was at six months, and Amy has had on average one operation a year. She has had grommets, as 'glue ear' is common in cleft children, she has had teeth removed, and at eight years old, she had her alveolar bone graft done - normally this is done at around 11, so Amy was very young.
We keep in regular contact with St Andrew's Centre, at Broomfield Hospital, Chelmsford, and Amy has recently had her ten-year audit.
I feel really privileged that Amy is my daughter. She is funny, beautiful, clever, happy, clefted, outgoing and very, very confident.
Having a cleft is just one small part of her. I wouldn't change a thing, as it has made Amy into the kind, compassionate and understanding little girl she is today, and I love her more than anything.
More information
- www.clapa.com - The website of the Cleft Lip and Palate Association offers support, information and practical advice for parents and professionals on all cleft lip and/or palate issues
- First Place by Kate Gaynor (Special Stories Publishing, 2008) - A useful picture book designed to help young children understand and accept the speech and language effects of cleft lip and palate, and how best to overcome them.
