Wagga's Arlo Arentz is only two-and-a-half years old and he has already had six surgeries.
But that does not keep the smile off his face.
Arlo was diagnosed with bilateral cleft lip and palate, a condition only one in 800 babies born in Australia have.
Now, Arlo's family want to raise awareness about the condition.
Jane and Brendan Arentz were getting excited about the arrival of their second child, but at a scheduled ultrasound, they got the sense something was wrong.
"The one who did the ultrasound kept coming back, and then she was like 'I need to get my supervisor'," Jane said.
"And we were like 'what is going on?'. We wanted to know what the problem was. But we had to wait to hear from our doctor."
On a later day, they got a call from their doctor telling them to come into the clinic right away. It was then they found out their son had a cleft lip.
"It was extremely emotional. I had never heard of it," Brendan said.
"The doctor gave us the news, and I was pretty confused, then she started showing us some photos.
"It was a bit confronting knowing your child is going to look considerably different when they are born."
Soon the Arentz family was off on their way to Canberra for more tests and a three-dimensional scan to try and view more of the cleft.
The medical staff asked the couple if they wanted to terminate the pregnancy. In their mind, they had never even contemplated not having their baby.
"That was even a bit upsetting hearing them ask us," Brendan said.
"We just said 'no, we are not going to do that. Why would we do that'," Jane added.
As the news sunk in, Jane and Brendan found ways to cope with the reality of the situation.
For Jane, it meant chatting to everyone she knew about what they had heard and what they thought.
Meanwhile, Brendan immediately looked things up online, such as 'who is the best surgeon?'. It was then he came across a support group on social media for other parents of children with a cleft lip or palate.
"I joined up, and you could see photos, hear stories and also ask some questions," Brendan said. "That helped a lot."
A bilateral cleft lip and palate is when the upper lip, gum and roof of the mouth fail to join together when the fetus is 12 weeks old.
There is still no defining reason as to why a baby will have the condition, but sometimes there can be a genetic predisposition.
"They asked if we had a family history, but we both don't have any," Jane said. "They asked if we wanted to do a test to see if one of us has the carrier, but we decided not to."
Brendan said there could be an assumption that the condition just impacts the facial structure, but it all is affected because it's all connected to the ears, throat and nose.
"The makeup inside the face, so the sinuses and all that is all slightly different," Brendan explained.
At 36 weeks, Jane went to have a checkup, and it was discovered she had polyhydramnios - a buildup of fluid.
"It was like Arlo was literally swimming in my tummy," Jane added. "I had to have an emergency caesarean because I also had gestational diabetes."
The parents had also set up a conference between the neonatal teams in Wagga and Sydney, so the local medical staff could learn how to feed Arlo properly.
After welcoming their precious Arlo into their lives, the Arentz family knew to expect at least two surgeries before he turned two to help correct the cleft. But he needed six.
"When he was 28 days old, we went to Wagga Base Hospital because his left testicle was red and his stomach was protruding," Jane said.
"They had to airlift us to Canberra. Initially, they said the surgery would take an hour, but it took four because the left testes had been compromised.
"Then, after a few days, we were almost about to leave, but the right one did not look right. So they had to take him back in."
When Arlo was three months old, the family travelled to Sydney for the third surgery to repair his lip.
"Then surgery four was when he had his palate repaired at nine months old," Jane said.
"Then he had the insertion of the bilateral grommets. With that, he had lots of infections, so they changed them."
The new grommets worked for a while, but then he needed new ones again.
"They were doing an overall health check, and they noticed the dead teste had grown, so they wanted to see if it was alive or just tissue," Brendan said.
"So rather than two surgeries, they decided to insert the new silver oxide grommets and did an exploratory procedure and just cut away the tissue."
Jane explained that Arlo would need surgery to revise his lip before starting school and then another surgery at seven years old for his palate.
While as a baby, Arlo had to be restricted from so many things, he is now a happy, healthy baby who adores following his older sister Mikayla, 7, around.
"He is very silly, but he gets everything from me," Mikayla said.
"We love him so much, and he is a beautiful boy that brings so much joy to our lives," Jane said.
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