A mum has revealed the heartbreaking ordeal she and her partner are facing after their baby was born with a rare condition – and they fear losing him each day.
When Ashleigh Brand and Cody Salmon found out they were expecting their first child, they were overjoyed.
But after their initial scan, their dream quickly turned into a nightmare.
READ MORE: ‘I was left with two black holes on my face as small pimple turned out to be CANCER – twice’
The couple, aged 31 and 32, were told that there was “so much wrong” with their unborn baby, that it’s likely he wouldn’t make it to full-term.
Not giving up hope, they decided to give him a chance at life.
Luca, now one, was born with a hole in the heart, a “misformed” ear, blocked airways and coloboma, where the iris doesn’t develop normally.
“I was petrified not knowing what his life would be like if he made it through the birth,” the food service assistant told Need To Know.
“During my pregnancy, they said his oesophagus may not be attached and he might not have genitals.
“I worried about how he’d look, how severe his case would be and if he did arrive alive, would he ever be happy?
“I just felt utterly heartbroken.
“But none of that really mattered, as I knew we’d love him either way.
“When I saw his face and heard his little cry, any fears we had completely washed away.
“The most important thing was that he was here – and nothing was going to take him away from me.”
Luca, immediately after being born, was rushed to have further testing.
He had to undergo brain surgery at just a few weeks old, as well as on his airway, since he couldn’t cough, cry or vomit without turning blue.
Ashleigh and Cody, terrified, knew this was the only option to keep him alive.
He’s since undergone two more airway surgeries, heart surgery and five additional brain procedures to have two shunts placed.
She said: “If he didn’t have any of the surgeries when he did, he wouldn’t be with us today.
“I knew it was a literal matter of life or death decision.
“Seeing him with all the tubes and bandages broke us.
“I just kept praying that he would be okay.
“I worry about losing him for good everyday, especially when he is unwell or whenever he has surgery, as we just never know.
“[I fear] that he won’t wake up or if something is going to go wrong during surgery.
“It’s always in the back of our minds – though we try not to think about it.”
Luca was diagnosed with CHARGE syndrome, a rare genetic condition that affects the nerves, heart, eyes, genitals and ears.
It’s estimated that around 1 in every 10,000 newborns are affected worldwide, according to the National Institutes of Health.
Aside from the aforementioned issues, he also has hydrocephalus – fluid build up – on the brain, as well as hearing loss, and in the future, he may suffer with growth or balance issues.
Thankfully, though, he was born with genitals and his oesophagus attached.
Luca regularly sees a speech therapist, physiotherapist and dietitian.
At home, he has to have overnight oxygen, a monitor and a feeding machine.
Currently, his condition remains stable; though this could change in a heartbeat.
Ashleigh said: “We almost lost him recently.
“He was being sick for five days straight and couldn’t breathe.
“It was terrifying.
“I do sometimes have to ask: ‘Why us?’
“But I know why – because we’d do anything for him.
“He’ll need around-the-clock care for the rest of his life.
“Cody and I are willing to take on that challenge though; anything for our little boy.”
Luca will soon undergo surgery to insert a peg into his stomach, which he’ll be able to eat through, as he can’t through his mouth.
Right now, though, Ashleigh has taken extended leave from work to become his full-time carer – and isn’t sure when, if ever, she’ll be able to return.
To help with mounting costs, the family have created a GoFundMe, with £6,500 raised, exceeding the £4,800 target.
Ashleigh, from Perth, Western Australia, added: “We’re having to rely on Cody’s income at the moment, but he’s just been made redundant, so now I don’t know what to do.
“It’s been so hard, especially as I’m having to spend so much time away from him to be with Luca.
“I don’t get to see family or friends [as much] anymore, as we have to make sure everyone is well beforehand.
“And Luca gets sick easily, so we don’t go outside.
“He is slowly learning new skills.
“But we aren’t sure how his speech or mobility will be; I’m hopeful he can walk and talk, though.
“Luca is so amazing, strong and brave.
“Not enough words can describe how much we love him and I couldn’t be more proud of how far he’s come.
“I hope he lives a long and happy life like other kids.
“But for now, my advice for other parents is to always trust your instinct.
“Every child with this condition is different.
“And don’t look things up, as that will only make the situation even more scary than it already is.”
