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‘We have two beautiful girls’: Rohan speaks of joy and heartache

This has already been a week to remember for Gary Rohan. It has nothing to do with Sydney's backs-to-the-wall win in Geelong or the fact he's about to play his 100th match – a milestone he thought he would never reach a few years back. On Wednesday, he and his wife Amie brought their baby Bella home for the first time.

"So far so good, she only woke up a couple of times for a feed," Rohan said. "They say that's pretty normal with preemie babies because they're in NICU (neonatal intensive care unit) for that long they're used to the sounds and noise around.

"You bring them home to a quiet place they kind of freak out.

"Fatherhood is very good… [I'm] loving every bit of it."

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For the parents of any newborn, the first few weeks are usually a joyous time. For the Rohans it was both a time of celebration and sorrow. Bella was born on April 12, about five weeks premature. Her twin sister Willow came into the world a minute later. She had five "precious" hours before, as Rohan described so beautifully on social media, "our darling Willow grew her little angel wings ".

Willow was born with anencephaly, a rare and fatal condition which affects the development of a foetuss brain, skull and scalp. Amie was 11 weeks in when the couple were told the news that every expectant parent dreads.

"We found out [Amie was pregnant] when she was four weeks, that was quite exciting," Rohan recalled. "At about seven, eight weeks we found out they'd be identical twins. There was more of a buzz, not knowing what we were going to do kind of thing.

"Then we went to New Zealand for a holiday. We came back and it was about the 11-week mark when we found out about the anencephaly for Willow. They were mixed emotions. We were excited we were going to have twins and then to be told about our situation."

The couple had a choice to terminate the pregnancy but to do so would have had effects on the healthy twin.

"We didn't want to risk losing both of them so we carried it out and had our five hours when they were born with Bella before she passed away," Rohan said.

The final weeks leading into delivery were difficult. Doctors had to drain fluid from Willow twice to get the twins closer to full term. They removed 2.1 litres out of Amie at 23 weeks, and another 2.6 litres at 29 weeks.

When they were born, doctors did not know how long they would have with Willow. "At birth the heart wasn't that strong," Rohan said. "The midwife told us we didn't really have that much time."

Rohan did not know what to do. Should he stay with Willow and Amie, who were taken to recovery, or go with Bella to the neonatal intensive care unit (NICU)?

"I spent time with both during that time. We had that five hours, Ames and myself and Willow which was nice. At about four-and-a-half hours she was still there. Our parents came to the hospital. It was nice they got to meet Willow before she passed away as well," he said.

"It was a memorable time I'll never forget.

"We have two beautiful girls…lucky we have one to bring home. She's home now and loving every minute of it."

Throughout, the couple have been willing to share their experience. Amie has granted interviews and written touching tributes to Willow on social media.

"Some days, the heavy fog may return, and the next day, it may recede once again. Its all an ebb and flow, a constant dance of sorrow and joy, pain and sweet love," she wrote in one post.

Usually media shy, Rohan took to Instagram to reach out to others who have been affected, urging people to ask them questions. It was a form of therapy. He told his teammates. Jarrad McVeigh, who lost his baby Luella to a heart condition, was a "massive help", Rohan said.

"I've had great support, it's got me through it. Ames' family, footy clubs back home and even other AFL clubs. I got cards from Hawthorn, even messages from other football players. I'm very grateful."

Rohan's hard times in his football career cannot be compared to what he and Amie have been through but reaching 100 games is a special landmark for him. It has taken him until his ninth season to get there. The man drafted the pick before him in 2009, North Melbourne's Ben Cunnington, posted his century in round one, 2015, and this week plays game 171.

Gary Rohan of the Swans celebrates a goal. Photo AAP

Rohan suffered a horrific double break in his leg in 2012, which cost him a shot at a premiership. Setback after setback meant what was initially thought to be a season-ending injury wiped out the best part of two seasons.

"The wound where the bone come through took forever to heal," Rohan said.

"When that started going well, starting walking and running was hurting me. It took forever to push through that.

"The boys at the club were how I got through that time, even my wife Amie at the time – she was a massive help, just to keep me positive, making sure there is a positive at the end of it, if I keep pushing things will turn my way and eventually it did."

Rohan, a fan favourite among the red and the white, is pleased he can share his milestone in front of the Swans faithful – who were there when he broke his leg and for his comeback game, and who gave him such a rousing ovation as he dedicated a goal to Willow.

"I love this club. They've stuck by me for so long," Rohan said. "The fans, they've been unbelievable with the support they've given me through my career. They're still giving to me this day."

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Andrew Wu

Andrew Wu writes on cricket and AFL for The Sydney Morning Herald

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