ALLOW CLEFT LIP AND PALATE BABIES TO HAVE URGENT SURGERIES DURING ELECTIVE SURGERY FREEZE
ALLOW CLEFT LIP AND PALATE BABIES TO HAVE URGENT SURGERIES DURING ELECTIVE SURGERY FREEZE
Why this petition matters
AS SEEN ON CHANNEL 9 NEWS:
1 in 700 Babies are born with a cleft. These babies have a long journey ahead of them of operations and recovery. It is a stressful, emotional and draining time for us parents as we watch our babies go through such a traumatic time in their little lives with little that we can do to take the physical and emotional pain away.
We found out our son had a bilateral cleft lip and palate when I was 20 weeks pregnant. I was devastated. I knew the journey we had ahead of us and I was in quite a depressed state for the remainder of my pregnancy.
When Jensen was born he faced challenges from Day One. Unable to suck to feed due to him not having a palate and he was initially fed via a syringe, soon moving onto bottles designed for cleft babies where milk is squeezed into his mouth.
For a Mum dealing with newborn life, that was overwhelming enough, but we were also dealing with our own personal emotions and anxiety. We were coming to terms with his physical appearance as well as telling people in our lives and bracing ourselves for their reactions. We were trying to navigate a cruel world where we had to decide simple things that are often exciting for parents like whether or not we should share photos of him. We were dealing with people looking at our son in a different way than our first baby was looked at, we were being asked questions that we did not know the answers to, we were nodding and smiling through numerous comments like “the medical world has come so far these days…”, we were scheduling in countless medical appointments and all the while speaking to a psychologist trying to prevent myself going back down a path of severe post natal anxiety I had with my first child.
We soon were given a timeline for Jensen’s life and what his medical journey would entail. This included lip surgery, palate surgery, hearing difficulties with the need for grommets or aids depending on the severity, feeding difficulties, speech therapy, orthodontic treatment, bone graft surgery and possibly other surgery revisions depending on the severity as he develops. We were introduced to a team of people at the Sydney Children’s Hospital that we’re going to be in Jensen’s life for MANY years; our surgeon, the clinical nurse consultant, the ENT, speech pathologist, and even a dentist.
I was being encouraged to join a support group on Facebook but was just not ready to read and hear about what I was about to face.
Jensen had to face his first major surgery at only 5 months of age. This was to repair his lip and in a time where only one parent was allowed in the hospital. I can’t explain how hard that was going through that experience without my husband. The recovery from that surgery for us was brutal. Our son did NOT cope well at all. He cried all day everyday for many weeks, we were grieving his cleft smile and trying our best to keep him happy and comfortable and do everything we could to reduce the pain. Jensen only ever wanted his Mum, and slept in my arms in the nursery chair being woken for pain meds for weeks on end.
It wasn’t long before we decided to start solids and because Jensen had no palate he hated every minute of this. I had to put tiny amounts of purée on my finger and place it inside his cheek in his mouth to help him get it down without it going UP and out his nose. To start with getting one finger of purée in without him screaming in pain from it coming out his nose was a win!
Jensen’s next surgery was schedule on the 4th of Feb 2022 and this surgery is to repair his palate. The lead up to this surgery has been incredibly daunting. It is bitter sweet. We know how much he needs this and how important this surgery is, but I’ve also been traumatised by his recovery the first time and the unknown of how he would cope this time around has certainly made me anxious. However, we were also feeling some relief that this first chapter of his lip and palate surgery would be closed and we could celebrate his first birthday knowing we had survived his first year of life with two major surgeries. I was looking forward to breathing again!
We also had made the decision as a family for me to extend my leave from work as I was not leaving Jensen to be cared for by anyone else until he was 120% through this recovery.
Everything changed when this surgery got cancelled. It doesn’t matter whether we go through the public or private system, it doesn’t matter who the surgeon is or what hospital we are at. The surgery is considered non urgent and has been cancelled. Just like that!
There are a huge amount of babies in the same position as Jensen. Waiting for surgeries for their clefts that they are in urgent need of. These children already have so much to deal with in their lives and a life of insecurities ahead of them, they do not need any developmental delays because of this decision (like speech and hearing) on top of this.
PLEASE sign this petition and spread some awareness for our beautiful cleft babies to get this decision reversed so that they can thrive and live their little lives to the fullest without being held back because of a Government decision.