I became the driving force of Cleft Connect Australia with the view to helping other cleft affected families.
You don’t go into a 20 week scan for you second born child with anything but an expectation of good news. I was so sure that everything was fine I had my husband, my 3 year old daughter, my mum and my Dad there to share my joy. The moment that the doctor told me my unborn baby had a gap in its face and was missing some of the gum line and lip and that it continued through his mouth, I knew my life would never be the same. After a quick google I had a name for the condition and my husband and I were to be parents of a cleft child. Research showed he would have a harder than normal life but I knew our baby would be loved beyond words and felt that would be more than enough.
I was worried before my son was born about how I would cope but all the negatives were swept away as baby Lucas was born as cute as a button. He had a cleft palate (a hole in his mouth) and a very visible cleft lip ( hole where one side of the lip should have been). Sadly because of his looks I had some people close to me want to blame me (there is no known cause) and shun my son. Happily others close to me and strangers saw past the blemish to help me celebrate the birth of my son. Sadly it is almost impossible to breast feed a baby born with a cleft and some health professionals who should have known better at times added to the stress.
In the first year my son went through 2 major surgeries. The first one at his tender age of around 4 months to repair his lip. The surgery is very invasive and recovery is so hard as my son and others are required to wear armbands for 6 weeks to stop them reaching the lip and potentially ruin the surgery. Feeding is hard Sleeping is hard Life is hard. The next surgery was around 8 months of age to fix the palate. They take skin from the gum and basically fill in the hole in the palate. It is so hard as a parent to see your child in obvious pain and some of the medication they have is a little frightening to say the least. To see my 8 month old child on a morphine drips was very surreal. After the operation you are not allowed to put anything harder than puree foods in their mouth. Quiet by accident I stumbled onto using Sinchies as a way of safely getting my son the nutrition he so desperately needed. I was able to squeeze the puree onto the tip of his tongue which kept his healing wound from damage. The next surgery my son will have is a bone graft to fix the gum at about 8 to 12 years old. More corrections and surgeries are had as necessary as the child grows up to full maturity.
Whilst the medical outcomes are so good in Australia there was a lack of support. When I googled I mainly saw overseas babies and there was no free help here in Australia. Well if you want something done, do it yourself and Cleft Connect Australia was born. I wanted to share what I had learnt as I would have loved to have the knowledge of the operations and the little things like the right bottles after the lip operation, using Sinchies to help after the palate operation. Just to be forewarned of some of the challenges and therefore have a much better level of preperation to get through these trying times would have been great.
I became the driving force and founding director of Cleft Connect Australia with the view to helping other cleft affected families with information so that no Australian family need be as unprepared as my family was. I really felt strongly about this after my experiences and got the ball rolling. I recruited my Dad to help set it up and we got our charity status. My vision was and still is that we did not ever charge for any help we give, do not take any money for ourselves in expenses and that all money raised would go to aid cleft families. I am proud to say this has and is happening. Cleft Connect Australia is not yet 2 years old and we have already had a successful “Grand Trivia Event” that raised much needed funds as well as a sizeable donations from our Sponsor BBC Digital and the Maroochydore RSL. This has allowed us to donate free hospital bags Australia wide at the time of the 3 main cleft operations. I want to get as many things in these free bags as well as getting as much information out there to the cleft affected families. I want to help as many families as I can and our webpage www.cleftconnect.org and facebook page are constantly being updated in the effort CCA can help many many families
I watch in awe of my son as goes through the challenges that life has thrown at him and marvel that he is such a gentle loving soul. I am so proud to be his Mum. I have met some great people who have helped me along this unexpected journey. To those people I thank them sincerely, to my family for their support I thank them and to my son who has been the catalyst for change, the world thanks you.