This is Eleanor, she is 1 of 700 Babies that are born with a cleft lip and palate. Babies like her have an incredibly long journey ahead of them; Filled with bone graphs, major, minor and correctional surgeries.

Eleanor is a beautiful, intelligent, bubbly baby girl of 6 months, she has overcome every obstacle that life has thrown at her. This includes:

·She required airflow and a glucose drip at birth, and was then taken to the NICU.

·She was Unable to suck when feeding, due to not having a palate and was initially fed via a syringe.

·Had jaundice, and had to spend time in a light box.

·She learnt to use a specialised bottle developed for cleft palate babies that allowed us to squeeze milk into her mouth. This in itself was scary to learn as she ran a constant risk of aspiration (when fluid enters the lungs).

·Feeding issues causing lack of weight gain

·Surgery to remove a painful neonatal tooth( toddler sized tooth)

·The discovery that she is hard of hearing and requires the use of a bone conductor (hearing aid)

·Discrimination by others for looking different

There are a series of surgeries designed to drastically improve Eleanor’s quality of life; fixing her cleft lip and providing her with a palate (so she can safely eat without choking on her food and drink). These surgeries are the first in a long line of procedures that she is scheduled to undergo. When one of these procedures is delayed, then all the other procedures are then also delayed.

Eleanor was due to undergo her life changing lip surgery on the 19th of January 2022 and would then have undergone her soft pallet repair at 9 months of age.

However even though this surgery is vitally important, it is unfortunately classed as elective surgery. This means that her lip surgery was cancelled due to the Covid-19 induced cancellation of elective surgeries. She still has no new surgery date and has been left in a state of limbo.

Eleanor is not alone, there are roughly 65 babies born in Victoria every year who have a cleft lip or palate diagnosis. These babies have also had their essential life changing surgery cancelled and will also have their later procedures delayed as a result.

The longer these surgeries are delayed, the worse the results can be such as:

· Increases in speech delays,

- Feeding complications 

· Scarring,

· Worse surgical results.

·Insecurities in older children, which can be detrimental to their mental health and quality of life.

Eleanor, like many other children don't have a voice that's being heard. As her parent, I need to advocate to ensure that her quality of life is considered when placing these surgeries on hold. I have endeavoured ever since she was born to ensure that I educate those around me.

For example people making comments like ‘what’s wrong with that baby?’ or scrunch up their faces with disgust that I take the time to introduce them to my daughter. A beautiful, vulnerable loving human who didn't chose this situation. 

I am calling on the Victorian government to reclassify so this situation NEVER happens again. Then to recommence cleft and palate surgeries as they have done for those experiencing infertility.

Please sign and help Eleanor and other babies/children like her, who are just trying to have a normal life.

Walking past a situation you know is wrong is excepting the standard, help me change that.

 

Updates

We have been featured in the local paper

https://pakenham.starcommunity.com.au/news/2022-01-25/mums-plea-for-surgery/

We have been featured on the channel 9 news

https://fb.watch/aM6yG0SP_h/