Baby Remi Grant forced to undergo life saving surgery interstate

At 12 weeks pregnant, Caitlin Grant was told her baby had a one in two chance of having Down syndrome. She decided not to take the confirmation test, but it did reveal a challenge ahead.

When Caitlin Grant was 12 weeks pregnant she discovered her baby had a one-in-two chance of having Down syndrome.

She refused the test to confirm a diagnosis.

“All the test was going to do was confirm something that we’ll find out for sure after he’s born and it does carry a small chance of miscarriage,” the 28-year-old said.

“We didn’t feel like it was worth it because we were happy either way, we were happy with how our life was going to look.”

Months later, she and her husband Angus Grant welcomed baby Remi who was born with Down syndrome.

“He’s a beautiful kid, he’s so resilient for a tiny, little newborn … we’re very lucky, we really are,” Mrs Grant, who lives in Moculta, said.

Baby Remi, who was born with down syndrome, is three months old and facing open heart surgery. Picture: Supplied by family

Remi has VSD and tetralogy of fallot. Picture: Supplied by family

However tests, including an echo cardiograms at 20 weeks and 30 weeks to ensure his heart was developing, did lead to a heartbreaking diagnosis.

Doctors found a VSD and a tetralogy of fallot which requires open heart surgery in Melbourne at the Royal Children’s Hospital.

“You don’t believe it at first,” Mrs Grant said.

“It’s hard to know that before your baby is born, they’re already going to have a really big challenge that most people wouldn’t go through in their entire life … it was difficult.”

In the coming weeks, the Grants will travel to Melbourne for Remi to undergo the surgery.

He will undergo open heart surgery at the Royal Children’s Hospital in Melbourne. Picture: Supplied by family

Baby Remi with his older sister, two-year-old Darcy. Picture: Supplied by family

Mrs Grant said while doctors say the surgery should be successful, currently the condition is affecting him quite a lot.

“His heart is pumping too much blood into lungs which is affecting his breathing — he’s on oxygen and a feeding tube,” she said.

“It’s really hard, no one wants to see their baby struggle, especially to breathe.

“It’s hard to watch a baby not even be able to drink a bottle without worrying they’re going to aspirate.”

Remi must have a oxygen and feeding tube. Picture: Supplied by family

Darcy loves her little brother and always helps the family. Picture: Supplied by family

Remi’s two-year-old sister Darcy is very cautious with him and always wants to hold him.

“She definitely picks up on what’s happening,” Mrs Grant said.

“It’s been hard on her specifically because she knows he’s unwell but she’s also just a toddler that wants to run around and play.

“It’s been hard for us as well, watching her not be able to do as many things as she wants to with Remi.”

Baby Remi with his older sister, two-year-old Darcy and parents Caitlin Dann and Angus Grant. Picture: Supplied by family

Caitlin and her husband Angus chose not to undergo the test to confirm whether their son had down syndrome. Picture: Supplied by family

Mrs Grant said having Remi has made Darcy “very compassionate at a very young age”.

“She notices when we are stressed and you can see her trying to think of ways to cheer us up, which she shouldn’t have to do but it really does help,” she said.

If you’d like to donate to support the young family during these tough times, you can here.

Originally published as Baby Remi Grant forced to undergo life saving surgery interstate