Love is all you need

After a few blunt questions from strangers, Shepparton’s Kayla Doncon was surprised people had no idea about the cleft condition.

And she had a right to be, given it affects about one in 800 babies.

Kayla’s brother and sister were both born with cleft lips and palates, so it wasn’t inconceivable that her daughter Greta would too.

But it was still something she was unprepared for.

With the gene in her family, Kayla was sent to Melbourne for her 20-week ultrasound with Greta, where she and husband Rhys learnt what was in store.

“I was shocked when we found out, which seems kind of silly given that’s what we were there for — but my mentality was that it wouldn’t happen to us,” Kayla said.

“I remember the stenographer giving us all this information and going through our options but I just wanted to leave the room and process it all.

“You’re not thinking rationally at that point but once I had time to process and talk to Mum I knew everything was going to be okay.”

Cleft lip or palate happens when parts of the lip, upper jaw or roof of the mouth don't join properly in early pregnancy, leaving a gap or opening.

Greta was born at the Royal Women’s Hospital in Melbourne on April 21, 2021, and went into specialist care to be fed through a tube until she could learn to drink from a special bottle — navigating her inability to suck.

In her short life so far, Greta’s felt the effects of COVID-19 on the health care system.

Her caesarean delivery was initially called off because there were no beds free in hospital.

Kayla had fasted all day, was prepped and ready to go when she got the news it wasn’t going to happen.

She was told they didn’t know when she’d be able to deliver Greta, with a combination of a pandemic baby boom and strain on health care workers at the time.

The next day Kayla went in to hospital at 7am and at 4pm a bed became free, and Greta was welcomed to the world.

Down the track, when it came time to repair Greta’s cleft lip — generally between four and six months of age — an elective surgery freeze in Victoria meant the surgery was cancelled three times.

“I was really frustrated it was even considered elective,” Kayla said.

“It is very black and white — either emergency or elective — but when it’s something for a baby that’s important for their development, and for some, breathing.”

Kayla was concerned a delay to the cleft surgeries could impact Greta’s development and make the recovery harder as she got older.

By the time she had surgery for her lip, in February 2022 at 10 months old, Greta was crawling and able to pull herself up on things, worrying her mother that she could bump her lip.

With Greta’s condition the family was referred to genetic counselling and a social worker for support and Kayla said the Royal Children’s Hospital had been “fantastic”.

They’ve also had support from Kayla’s family, with her parents going through it twice with her brother and sister.

“I think that’s where my worries come from, not because of how [Greta] looks or anything like that — it was just knowing what she’d have to go through,” Kayla said.

Kayla’s brother had about eight surgeries and her sister 12 all up, as well as speech therapy, orthodontics and occupational therapy.

But it’s not just the medical treatment required that concerns Kayla, she worries about bullying as Greta gets older.

“It’s hard enough in your pre-teen and teenage years without having something else on top of that,” she said.

“By trying to raise awareness and having my brother and sister as role models I’m hoping that will all play a big part in her being confident in her own skin.”

But being treated or seen as different is something the family has already experienced.

“Sometimes people would just be really blunt in their approach with strangers coming up and asking ‘what’s wrong with her face’,” Kayla said.

“I was surprised how many people didn’t know anything about cleft lips or palates — I’ve grown up with my siblings so I was probably a bit desensitised.”

For Greta’s older sisters — Eden, 7, and Stella, 5 — Kayla and Rhys have explained it in simple terms. Last year, for Cleft Awareness Week, Eden gave a presentation to her class about her little sister.

“If [school children] are more aware of it and used to it it’s less likely to be something they will be bullied for later in life and kids become a bit more accepting,” Kayla said.

It’s now a waiting game for Greta’s palate surgery in the coming months, and beyond that possibly further surgery — but almost definitely orthodontics and dental work.

Kayla speaks optimistically about what’s ahead.

“We’re really lucky to have the Royal Children’s and Monash Children’s [hospitals] just down the road.

“People are also a lot more accepting these days — I think we’re all a lot more aware of each other being unique.

“Once we came to terms with [Greta’s condition] we knew she’d be okay and really well looked after and loved all the same.”