Many parents spend considerable time when their baby is born with a cleft, wondering “why”, and “how” it has happened. There are a few myths still around and many people who are not experts have theories they are anxious to pass on. There would be few parents who haven’t heard “Oh, I read somewhere that clefts are caused by….”

Even among professionals, there is not always complete agreement on the causes, despite considerable research. One in every 600-700 babies is born with a cleft, and in about one-third of those births, there is someone else in the family who was born with a cleft.

When a baby is born with a cleft, there is much for new parents to process and absorb. Sometimes the birth of a baby with a medical problem can draw a family together. Other times, coping with unexpected news can place added strains, not only on the new parent, but also on other family members. Early difficulties in the extended family can sometimes stem from the confusion over why clefts occur. Some relatives feel a responsibility to declare their family innocent of blame with “Well, it’s not on our side of the family…” This can cause uncomfortable feelings all round. When there is a known history of clefts, there is often less shock. There are different feelings to be worked through for everyone involved.

While the parents are busy learning about the cleft condition, and working through their own feelings, other family members also need to reconcile or process their memories and feelings. Sometimes grandparents have childhood memories of someone they knew who had a cleft, perhaps someone who didn’t have the benefit of today’s surgical expertise. These memories can understandably increase their anxieties for their new grandchild, particularly for those who grew up in country areas and who perhaps didn’t have access to cleft medical care at the time.

Sometimes it is hard for new parents to accept the different points of view from older generations and to realize we all take our own time to process unexpected news. It’s also hard to believe that what appear to be hurtful comments is often someone’s way of saying “I care, but I don’t know how to tell you.”

The motto of CleftPALS Qld is “The sharing helps”. Many parents and extended families have found that sharing their thoughts and feelings with others who have been through similar experiences can be very helpful. Social get-togethers are held periodically at various locations throughout the year.

Older children often gain a great deal of confidence and self-esteem meeting other children born like them. A community of people who are interested in their development and who share a common history will add to their sense of belonging.