Content warning: This post discusses the loss of a baby
Sydney Swans footballer Gary Rohan and wife Amie announced they were expecting twins on Instagram over the weekend, but simultaneously shared some very sad news about one of their babies.
Congenital birth defect
Gary and Amie’s babies are due in May 2018, but Gary explained they’d only be able to take one twin home.
The other baby has a terminal condition called anencephaly. This means that the brain, skull and scalp don’t develop as expected.
Babies with anencephaly pass away shortly after birth and the diagnosis in a twin comes with unique and difficult challenges.
“Anencephaly is a congenital birth defect that occurs in approximately one in one thousand pregnancies. It is a neural tube defect, just as is spina bifida. Life expectancy for a baby with anencephaly after birth is a few hours to a few days.” – source
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Gary revealed they’ve been struggling to process this diagnosis and were not sure how to approach telling people about the pregnancy, and how things are progressing.
Ultimately, he and Amie settled on full disclosure – and asked for support from followers as they go through this very challenging time.
“Over the moon”
“Amie and I are over the moon to share with you all that we have been blessed twice over. Sadly, one of our beautiful bubs has been diagnosed with anencephaly,” Gary posted.
“Babies born with anencephaly are not compatible with life. Ames and I have known about this since our 11 week scan, and since knowing, we’ve been constantly discussing what we should do, how we should tell people and if we should tell people at all.”
“We come to the decision that either way, BOTH our babies are beautiful, precious human beings, with the only thing being that sadly ones life is destined to be cut short.”
Gary explained they’ve decided to share their experience, in the hope that their journey might help others to better understand the condition their baby has – and the challenges of dealing with life and loss.
“There are going to be some really difficult days ahead but also many happy ones, and we want to share each and every one of those moments with you all. Talking about our situation with people has been our therapy, letting our emotions out has been the best thing for us personally.”
The couple are appealing to others who may have experience of anencephaly to reach out to them, if they’re comfortable doing that, in a bid to find out as much as they can about what lies ahead and to raise awareness of the condition.
“We would love for anyone who has been affected by anencephaly themselves or know of others affected by anencephaly to please contact us. Don’t be afraid to talk to us about it. That’s what we want, we want people to ask questions, we want to talk about it with others. We still need questions answered as much as everyone else.”
“We will always be parents to twins”
Followers quickly began filling the comments section under Gary’s post, detailing their own losses and offering advice on where to access further support and get in touch with other parents who’ve lost children to anencephaly.
Amie and Gary themselves are remaining hopeful as they navigate a really difficult time.
“At the end of the day, we will always be parents to twins, our journey has just been written a little differently to others,” Gary posted.