Celebrating the life of their twin daughter with anencephaly was 'a dream'
Human Interest

‘I miss those kicks’: Remembering twin with anencephaly brings healing

anencephaly

Last year, Australian football star Gary Rohan and his wife Amie welcomed twin girls, Bella Rae and Willow Nevaeh. Before birth, the couple was told that Willow had anencephaly, and likely would not live long. At the time, Gary wrote, “Sadly, one of our beautiful bubs has been diagnosed with anencephaly. […] BOTH our babies are beautiful, precious human beings, with the only thing being that sadly one’s life is destined to be cut short.”

Tragically, Willow died just five hours after birth.

A year after the joyful and tragic day, the Rohan’s acknowledged both of their daughters in a celebration of Bella’s first birthday and Willow’s Remembrance Day. Amie wrote on Instagram that it was “The most perfect day for our perfect girls.”

 

 

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The most perfect day for our perfect girls @garyrohan16 Saturday was a dream for me to be honest, a dream I’ve had since I was pregnant. I knew I wanted to do something for both our girls to celebrate and remember them both, but when that was going to be I honestly had no idea. I wanted to do it right, and I wanted every detail to be perfect. To me, Saturday was perfect 💞 I feel ‘healed’. I forever know that our grief will continue to come and go. It will never truly end. It may become softer over time, more gentle, and some days will feel sharp. But acknowledging both our girls the way we did on Saturday was a big step forward in healing our hurting hearts. 💗🎀🌸🌺🌷🌼💛✨ #sisters

A post shared by a m i e r o h a n (@amierohan_) on

Amie added that the day was “a dream I’ve had since I was pregnant.” She wrote, “I knew I wanted to do something for both our girls to celebrate and remember them both, but when that was going to be I honestly had no idea.” The event, decorated with dozens of pink and gold balloons, was exactly what she had hoped for. She wrote, “To me, Saturday was perfect. I feel ‘healed.’” While the grief for their for Willow continues, she wrote, “But acknowledging both our girls the way we did on Saturday was a big step forward in healing our hurting hearts.”

READ: Michael’s brother, born with anencephaly, was a blessing – just not in the way he expected

While many parents of babies with anencephaly are pressured to end their child’s life in abortion, the Rohans spoke openly about their decision to carry Willow to term. Throughout the pregnancy, Amie shared photos and videos of her growing twin bump. Reflecting on those posts this year, she wrote, “It’s crazy, whilst I was in the thick of it, I thought I’d never be able to forget the pain I was in carrying the girls. But now looking back, all I think of is how is much I miss it! How much I miss those kicks, those little Bella & Willow kicks.”

Many parents of babies with anencephaly have treasured the brief time they have with their children, and at least one child with anencephaly has defied the odds, living much longer than expected. And while everyone hopes their child will be the one to prove the doctors wrong, a short life is never a reason for abortion.

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