WHAT IS A CLEFT?
Early in pregnancy at about 6-8 weeks, the usual fusing,or joining up of tissues of the lip and/or palate does not occur, leaving an opening or “cleft”. A cleft sometimes occurs in the lip, or the palate (soft and/or hard palate), or the lip and palate together. It can occur on one side of the lip/palate (called a uni-lateral cleft) or on both sides (called a bi-lateral cleft). A cleft lip may sometimes be called a ‘hare lip’. This term dates back to medieval times when it was believed a mother gave birth to a baby with a cleft lip because a hare had jumped across her path. ‘Cleft lip’ is a more meaningful term to describe the condition today.
DO MANY BABIES HAVE A CLEFT?
Clefts are one of the more common congenital conditions, affecting one in every 700 babies born in Australia.
DETECTION OF A CLEFT
Advances in technology have meant that more clefts are now being detected during a routine ultrasound in pregnancy. There are many reasons why a cleft may not be detected by ultrasound: position of the baby, lack of amniotic fluid, maternal tissue density and scarring, time of gestation, baby’s limbs moving across the face. Clefts of the palate only are difficult to detect by ultrasound. Diagnosis by ultrasound means you have time to prepare emotionally and practically for the arrival of your baby. Clefts not detected by ultrasound are usually detected at or soon after birth.
YOUR FIRST REACTIONS
There are many different feelings and reactions that parents and their families will experience when a cleft is diagnosed. These feelings and reactions can include: shock, denial, confusion, anger, acceptance, maybe guilt or blame, along with uncertainty. It is important to remember that all of these reactions are normal. They are to be expected and should all be respected.
WHY DID IT HAPPEN?
In a small number of cases, there is a relative also born with a cleft, therefore there is a genetic link. For the remainder there is no family history. The cause can be: unknown, multifactorial, chromosomal, or environmental. It is important to realise that clefts are not caused by feelings or actions of one or both parents, and research has shown that there is no one simple reason. Genetic counselling is available if you wish to discuss causes and the possibility of future children being affected by a cleft.
WHAT TREATMENT WILL OUR BABY NEED?
Your baby’s lip will be surgically closed by about 3-4 months of age, and the palate between 6-9 months. Different hospitals have different time frames so refer to your surgeon for specific details on your baby’s treatment plan. Your baby’s surgeon will see him/her regularly as he/she grows. In the early years other specialists may be involved. Most children will see a dentist, an orthodontist, some may need help from a speech pathologist and some may need to see an ear/nose/throat specialist. Each cleft is individual, and each child’s needs are different. After the initial surgery to repair the lip and/or palate, hospitalisation is kept to a minimum with treatment being mainly check-ups for several years when further treatment may be considered.
WILL THE TREATMENT BE COVERED BY HEALTH INSURANCE?
Most specialist appointments, surgery and hospitalisation are covered by Medicare for the public patient. For the private patient, discussion of scheduled fees may be advisable with professionals as fees can vary and a gap may need to be paid. CleftPALS has successfully lobbied to have our children’s orthodontic treatment funded through the Medicare system, although not all procedures are fully covered. A child with any cleft type is eligible and you must apply for these benefits.
HOW WILL OUR BABY FEED?
Babies with a cleft can be fed by a variety of methods. Whichever method of feeding you decide is right for you and your baby, it will require support from family, friends and advice from knowledgeable people. Breastfeeding: A baby with a cleft lip only can usually be breastfed once a suitable position is found. It is important to realise that a cleft in the palate interrupts normal suction, which means that breastfeeding may need to be supplemented with expressed breast milk fed by another method e.g. cup, bottle, supply line. With appropriate information and support you may be able to combine breastfeeding and supplementary feeding. Eventually, after surgical repair, it may be possible to achieve full breastfeeding.
Bottlefeeding: There is an extensive array of bottles, teats, cups and spouts to feed your baby with expressed breast milk or formula.
Professional Advice: The hospital staff who care for you and your baby after delivery can assist and inform you about feeding methods.
Parent to Parent Advice: CleftPALS is able to provide information regarding feeding equipment and advice on feeding your baby.
HOW WILL WE TELL FAMILY AND FRIENDS?
This can be difficult at first for some parents. Reactions of family and friends will vary. Some will be open and supportive and others may withdraw because they need some time to accept this unexpected news. Think about what you want to say and to whom. Some will want more information than others. CleftPALS feels that it’s important to explain simply and honestly about your baby’s cleft as soon as possible and have your family and close friends visit whilst you are still in hospital.
HOW WILL WE EXPLAIN THE CLEFT TO OUR OTHER CHILDREN?
If you have other children you will no doubt find that they accept the news more readily than the adults around you. Whatever the age, young children usually understand more than we give them credit for. So simply tell them the facts - ‘the baby’s lip/palate didn’t join while the baby was growing in mummy’s tummy and he/she will have an operation when he/she is a little bigger to join it up’. Even a toddler can accept this. Don’t allow friends or relatives to describe it as a ‘sore’ lip as young children may unnecessarily worry that the baby is experiencing pain.
WHAT CAN WE DO FOR OUR BABY’S FUTURE?
Provided they have the support of a loving family and the correct treatment, children with clefts are able to lead a normal life. Parents can make sure they keep appointments with the specialists, set a high standard of dental care at home, encourage them to enjoy the magic of communication and above all love them for the individuals they are. As parents, we recognise that these children have special needs at certain times, as do our other children, but we aim to bring them up with the healthy self-esteem all children need to cope with the outside world.
ABOUT CLEFTPALS
What is CleftPALS? CleftPALS is a national organisation of parents and professionals involved in the treatment of the cleft condition. We all volunteer our time and efforts to provide information and support to families and professionals dealing with a cleft condition. We have members throughout Australia and exchange information with other parent groups around the world.
CleftPALS Newborn Programme We offer support and guidance to new families all over Australia. We have contact parents who can visit you while you are still in hospital or once you get home. Ask your doctor or midwife to call us if you are still in hospital or call us yourselves. It can be very helpful to talk with another parent who has been through it all already.
For Parents of Older Children CleftPALS is not just for parents of new babies. We are there at the end of the phone any time you want some advice or someone to talk to.
Reliable Information We also send newsletters throughout the year to members and professionals, with articles by specialists, letters from other parents sharing experiences and ideas and sometimes letters from children and adults who were born with a cleft themselves. Information from the Internet: while this can be an extremely useful information tool, parents need to be wary of websites. Be aware that the information stated may not be applicable to your child.
REMEMBER - THE SHARING HELPS .....