Campaigning for cleft families

The COVID-19 pandemic has understandably placed many strains on our health system and all of us individually. We’ve locked down more times than we can count, separated from our loved ones, missed milestones and cancelled weddings, birthdays and overseas travel. We’ve juggled kids and work from home, school closures, deciphered ever changing rules and advice and done our bit to protect ourselves and each other.

It’s been a long (almost) three years but in many ways it feels like we’re no better off. Patients awaiting time critical and important surgeries have suffered the consequences of elective surgery freezes and cuts a number of times, including children and teens born with the cleft condition. Although these “freezes” are short-term, the longer-term effects of these time delays can be significant.

For cleft babies, surgeries to repair their lip and palate need to be performed at a certain time for the child to be able to feed properly and for dental and speech development. Depending on the child, the surgery may also be pertinent for hearing.

For cleft kids in their pre-teen years, timing is critical to perform the Alveolar Bone Grafting procedure. This is done at a very specific time individual to the child’s development.

Although some elective surgery has resumed, we are calling on the government to protect cleft-related surgeries going forward to ensure hospitals can quickly move through the backlog and continue to provide healthcare to these kids exactly when they need it most.

New strains of COVID-19 are inevitable, as are fluctuating case numbers particularly as we head into the cooler months.

We must protect our most vulnerable Victorians and ensure our health system has capacity for an increase in COVID-related hospitalisations but not at the expense of a whole other group of people who need our hospitals too. People who need surgery now, who are in pain, who can’t function in everyday life and people who are greatly suffering mentally and physically. We are not talking just elective, cosmetic surgery, we are talking heart surgery, surgery to remove tonsils and/or adenoids to treat obstructive and dangerous sleep apnea, painful hernia or kidney stone removal, cataract extraction and the list goes on.

Our healthcare workers are doing all that they can, they’re burnt out and hospitals are supporting and advocating for their patients. But in the third year of this pandemic something isn’t working and there must be a different or more innovative approach to “live” with this virus otherwise we will be having the same conversations during year six.

Elective surgery is categorised based on national guidelines with the clinical indication being the “urgency” of the procedure.

• Category 1: Procedures that are clinically indicated within 30 days
• Category 2: Procedures that are clinically indicated within 90 days
• Category 3: Procedures that are clinically indicated within 365 days

While these guidelines work in a perfect world, how do they apply in pandemic terms and what happens when timeframes significant blow out past these 30, 90 or 365 days?

I read an article quoting Dr. Steve Threlkeld, co-chair of the infection control program at Baptist Memorial Hospital-Memphis recently which resonated:

“An elective procedure is a relative term. Today’s elective procedure may become next week’s emergent procedure if we don’t take care of the problem.”

Why cleft surgeries are time critical

• Improving babies feeding experiences both via the specialised bottles and for introducing solids
• Avoiding or improving weight gain issues
• Reducing risks for choking, aspiration, gas and reflux which some children experience due to feeding difficulties and not being able to make a proper seal or suction with their mouth
• Resolved feeding issues to provide parents the confidence to start children in care if they’re returning to work
• Potentially being able to establish breastfeeding (post palate repair)
• Speech development (critical post palate repair)
• Dental development
• Hearing assessments to identify whether the children needs aids or grommets
• Facial growth
• Intervention to avoid future complications or additional surgery
• Body positivity / confidence, particularly for older children
• Best possible surgical results 

About clefts

Around one in 700 babies are born with a cleft around the world.

In early pregnancy, different parts of a baby’s face develop separately and then join together. If some parts do not join properly, the baby is born with a cleft.

A cleft lip and/or palate is the most common craniofacial abnormality, which means problems to do with the skull and face.

During their lifetime, cleft kids will undergo a number of surgeries to repair their lip and palate to assist with feeding, speech development, growth of adult teeth and hearing. 

Greta’s story 

At 20 weeks gestation, we found out our beautiful little Greta was going to be born with a unilateral cleft lip and hole in her soft palate. Despite a strong family history of clefts, the diagnosis was a shock, knowing the surgeries Greta would face at such a young age and ongoing through out her life.

Immediately as a parent you think the worst. What will it be like putting my baby under anesthetic? How will they recover? Will they be bullied or feel self conscious about their appearance? Was this my fault? Will my children face this with their own kids one day?

When Greta was born she faced significant feeding difficulties as most cleft babies do. She was initially fed via a feeding tube before learning to be fed through a special bottle that allows you to squeeze milk into the babies mouth (cleft babies cannot perform the suction to do this themselves via a bottle or the breast). Introducing solids has been both scary and stressful. Lots of choking episodes, food and water coming out of the nose and tears. We have battled with slow and low weight gain and feeding aversions. Some days, we syringed milk into Greta’s mouth just to get some volume of milk in. Thankfully, as Greta has grown older and stronger she has overcome many of these issues and we have all found our feet a little more.

From day dot we have been so well supported by the Royal Children’s Hospital, our local GP and feeding clinic in Shepparton. As well as this we have found support via the wonderful CleftPALS Victoria online support group, and our family. Fortunately, I have my mum and dad who have walked this journey twice before me and my brother and sister as role models - both who were also born with cleft lips and palates.

That aside, the two surgeries Greta will undergo in the first year of her life have always been lingering in the back of my mind. I battle between trying not to wish these precious months away and also just wishing for the moment we are over the hump and past these surgeries.

Surgery is needed to close the gap left by the cleft and every cleft is unique, just like every child, so the exact treatment pathway will vary. Usually, the lip is repaired at six months and the palate around 12 months of age. Further surgery may also be required to help with issues such as speech and growth of adult teeth. It may also include speech therapy, help with hearing, orthodontic work etc. Later during school years, many cleft-affected kids will undergo Alveolar Bone Grafting.

Due to previous COVID-19 related elective surgery freezes, many cleft surgeries have been delayed significantly and some families are still waiting in limbo for a date. The palate and bone graft surgeries in particular are time critical to specific developmental milestones.

Greta’s first surgery to repair her lip was due at six months, while her palate (inside her mouth) was to be done around 12 months of age. The palate being the more significant surgery.

Greta is now just shy of 10 months of age and we have had three cancellations - two due to elective surgery freezes and one due to us testing positive for COVID four weeks prior.

A new date of Feb 17 has now been set and we are hoping this is fourth time lucky. Due to delays with Greta’s first surgery, her lip and palate repair are going to be combined. While we will be extremely pleased and grateful to (hopefully) have these two surgeries out of the way, this is obviously going to be a big procedure and recovery for our little girl.

We can’t even imagine the many others in our shoes - and even worse off - who are also suffering.

PLEASE sign and share. Help our cleft kids get the surgeries they need … when they need them!

Media support

• One FM radio
• Kidspot
• WIN TV Shepparton: 

Resources

CleftPALS Victoria can help with support for families and friends and information about the cleft condition.

For more information, visit: https://www.cleftpalsvic.com

Please note, this petition is not in any way affiliated with CleftPALS and these views are my own.