When Kallangur tyke, Harry Leather, was born with a cleft lip and palate four years ago, it did little to dampen his boisterous spirit.
A lover of LEGO, ‘How to Train Your Dragon’, and little brother, Isaac – Harry has endured multiple operations since he was three months old in order to repair his lip and mouth from a condition that affects approximately one in 700 children in Australia.
Cleft lip and palate is a common birth condition whereby the lip and/or roof of the mouth doesn’t fuse together during pregnancy, leaving an obvious facial abnormality that makes it very difficult to swallow food and talk. Surgery is needed to stretch the skin and close the gaps so that the lips and palate function normally.
When Harry’s mum, Belinda Heinze, discovered the abnormality at her 20 week scan, it was a surprise that initially turned she and husband, Todd’s, world upside down. But after lip and palate repair, three sets of grommets, multiple specialist visits, and reaching out to other parents in a similar situation, Belinda has taken it all into her stride to become the Vice President of the QLD organisation, CleftPALS QLD Inc.
“When a baby is born with either a cleft lip, palate, or both, the parents often experience a whole range of emotions in which they need someone to debrief to,” Belinda explains. “Many feel unprepared in how to look after a cleft baby and where to go to access some of this help, so we at CleftPALS QLD Inc. provide social support and feeding equipment.”
Be it one-on-one mum hook-ups, phone conversations, group catch-ups, information gathering, or service directing, they also sell arm splints for post-operative care and specialised teat and bottle supplies at low cost. “Due to the cavity in a child’s lip and mouth, swallowing liquids and food is very difficult, even more so after operations where their mouth has stitches and is recovering. They need the arm splints to prevent the child from putting their fingers into their mouths, and specialised teats and bottles that won’t damage the repair.”
When their original supplier stopped making these post-operative teats a few years ago, CleftPALS QLD Inc. was luckily able to organise a different engineer and manufacturer, but at a cost of $13,000. While this outlay was partly funded by grants and donations, this solely mums-and-dads volunteer organisation has also had to rely on other fundraising ventures such as sausage sizzles and a kids’ clothes market to help boost the funds needed to support new families.
“We are a charitable organisation, charging only $10 to become a member, although people don’t have to become a member to access our services. We are here purely to support the families of cleft ilp and palate children, and it’s all about finding the right balance of not frightening the parents but not dismissing their fears either. We aim to let the parents know that having a child with a cleft lip or palate does not limit your life; only enriches it.”
Receiving between three and six calls a week from parents who need support with their child, Belinda believes that raising awareness about the condition is equally important. “Parents need to feel that they are not alone and that they don’t need to hide – that the condition is just that – a condition which is treatable and where the outcomes are positive and always improving. Yes, there are numerous ENT, dental, hospital, Speech-language, and Occupational Therapist appointments that are part of the ongoing medical process, but the services out there are very good, and we’ve been very happy with Harry’s progress so far.”
With barely a scar now visible on Harry’s co-joined upper lip, most people would not know that Harry had been born with such a severe facial abnormality. But Belinda says that even before his operation, he never encountered any negativity from the public. “Nobody on the streets ever stopped and stared at him in a negative way. Some people recognised the condition and tried to encourage me with kind words and well wishes. Cleft lip and palate can be hereditary, and people generally don’t like to differentiate; seeing only the beautiful, jubilant character of the child instead.”
Like many other cleft kids, Harry’s palate will need further operations in coming years such as a bone graft from his hip to fill a gap in the jaw, later having that widened to set the teeth in all the correct places. “This is a common procedure for many cleft palate children, and whilst it sounds daunting, the results speak for themselves. If treated properly, a cleft lip and palate these days can be almost undetectable.”
Facebook: CleftPALS QLD Inc.
Email: support@cleftpalsqld.org.au
Ph: 1300 362 056