Sydney forward Gary Rohan has bravely opened up about the tragedy of losing one of his twin daughters last month.

Rohan's wife Amie gave birth to their girls Bella Rae and Willow Nevaeh on Thursday April 12, but Willow sadly passed away just hours later.

She had previously been diagnosed with anencephaly – a fatal condition that prevents the formation of a baby's brain and skull – and had no chance of survival once she entered the world.

The Rohans and their parents were able to spend around five precious hours with Willow, and the Swan said although it was a heartbreaking situation to deal with, that time with his tiny daughter was priceless. 

"It was pretty tough because Bella went straight to the NICU nursery and Willow went with Amie into recovery," Rohan said.

"I was going in between both, and didn't know whether to go with Bella or stay with Amie and Willow.

"But our parents came in and got to meet Willow before she passed, and that five hours was a very memorable time that I'll never forget.

"It's been a tough rollercoaster, but we had two beautiful girls and were lucky enough we got to bring one home.

"Fatherhood is really good and I'm loving every minute of it."

Rohan spent plenty of time at the hospital with his daughter, but he was finally able to bring Bella home on Wednesday, where she's been settling into life with her parents and their faithful beagle Borris.

The footy world has rallied around the 26-year-old and his family over the past few weeks, and Rohan said both he and Amie have been overwhelmed by the support they've received from all over the country.

"It's been amazing," he said.

"The boys and the coaches have been a massive help for me, and as soon as we found out the news in November I told them straight away because I'm with them 24-7.

"I've had messages from other clubs, I got a card from Hawthorn, and a lot of messages from other players around the AFL.

"I'm very grateful."

Rohan will play his 100th game against North Melbourne on Saturday, and it's sure to be a night of mixed emotions.

In his ninth season, Rohan has battled a host of injuries along the way, most notably the gruesome broken leg he suffered against the Kangaroos in 2012, an injury that cost him almost two years of footy and a chance to be part of Sydney's premiership side that season.

Rohan admits the milestone is one he thought might never arrive.

"Plenty of times I thought I'd never make it to 100 games, especially after the broken leg shattered my confidence," he said.

"But I love this club, they've stuck by me for so long and they've been sensational.

"The fans have been unbelievable with the support they've given me throughout my career too.

"It's been a very long road, but it means a lot to get there after what I've been through."

If you or someone you know is looking for support, visit: anencephaly.info