AFL star Gary Rohan and his wife Aime didn’t know whether to tell people that they’re expecting twins but only one child will survive.
“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,” the 26-year-old Sydney Swans player posted to Instagram.
“We came to the decision that either way, BOTH our babies are beautiful, precious human beings. The only thing being, that sadly one’s life is destined to be cut short.
“There are going to be some really difficult days ahead but also many happy ones.”
Rohan revealed one of the pair’s “beautiful bubs” has been diagnosed with anencephaly – a rare and serious birth defect in which a baby is born without parts of the brain and skull.
According to the Centre for Disease Control in the US, there is no cure for anencephaly and almost all babies with the condition will die shortly after birth.
“Babies born with anencephaly are not compatible with life,” Rohan explained.
The couple is speaking out not necessarily to raise awareness – the causes for anencephaly are unknown, with the CDC stating: “anencephaly happens if the upper part of the neural tube does not close all the way in the womb” and that “folic acid before and during early pregnancy can help prevent neural tube defects”.
LISTEN: Women share their birth stories, from touching to difficult. Post continues after audio.
Instead, they are sharing their story to offer support.
“We would love for anyone who has been affected by anencephaly themselves or know of others affected by anencephaly to please contact us,” Rohan wrote, saying talking to people has been a form of “therapy” for both himself and Aime.
“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.”
Though the story has no happy ending, there is no doubt the little baby born without a chance will be loved fiercely and forever remembered by his parents.
“And at the end of the day, we will always be parents to twins, our journey has just been written a little differently to others,” Rohan said.
Our hearts go out to Gary and Aime.
Top Comments
I looked after an elderly lady with dementia who had four beautiful daughters, but every night she would get up and go into all the rooms along the corridor looking for her baby ... I would assure her that "baby" was in the nursery for the night and that the nurses would bring "baby" to her if she needed feeding during the night. Satisfied, she would go back to her bed.
Her husband told me that her last pregnancy had been a baby with anencephaly, incompatible with life, and that the doctors and nurses had whisked the baby away immediately after birth and they were not allowed to hold her or see her. I believe they did not even have a burial for the child.
Nowadays the parents and baby are treated with greater compassion, the parents are encouraged to hold the baby if possible, and photos are taken (with a pretty hat or bonnet to cover up the area). Older children may be allowed to visit and meet their younger sibling. I hope that this brings a sense of peace to the parents, and although there is grief there is not the wondering "what happened to my baby?" that plagued my patient for 60 years or more.
There is a beautiful story about Eva Grace Young who had ancephaly (parents Keri and Royce - he wrote a moving account on medium. com) and inspired the creation of the Eva Protocol in Oklahoma (also TX and CO). This family were able to find joy and meaning in Eva’s life through effecting life for others by donating her organs.