Northern Ireland woman facing loss of unborn child says parents like her need more support
A pregnant Limavady mother whose unborn daughter has a fatal foetal abnormality has hit out at the lack of information and options being offered to prospective parents after a devastating diagnosis.
Erin O'Hara and her partner Jamie McCormick (23) were told at the 20-week scan that their baby girl, whom they have already named Freya, has a condition called anencephaly - the absence of a major portion of the brain, skull, and scalp - and cannot survive outside the womb.
Despite being told there is no chance of survival and that abortion is an option, Erin told the Belfast Telegraph last month that she will continue with the pregnancy, and has vowed to help raise public awareness of the untreatable condition.
Her difficult decision has attracted a huge number of supportive messages from across the world.
Last week, the 24-year-old clerical officer, who is 29 weeks pregnant today, held a baby shower for Freya which raised £4,000 for charity.
Afterwards, she told this newspaper she believes parents must be informed of all their options when they are given such tragic news.
"When we were given our diagnosis we were told on at least four occasions that we could have a termination - but there was a lot less information about the perinatal care that was available to us and that's something I can't get over," she said. "I do feel that if other mothers knew what care was out there, maybe it would make a difference.
"The doctors say, 'A lot of women in this situation would opt for a termination'. But if everyone's rallying for choice then they should know what options they have to choose from."
She added: "At least we now know more about what memories we can make about Freya, and keepsakes. At the time of diagnosis I think it's very important to be given all of your options.
"I knew from the get-go that a termination wasn't an option for me, but there's only so much you could do and say to us unless you're really trained for that.
"A proper support mechanism needs to be in place for anyone going through the same thing as us. You need to be told everything at the time of diagnosis as opposed to being sent home to think about it having been given basically no information at all."
Erin says she's grateful for the unstinting support of her mother, Winifred, who told her: "We will love this little baby no matter what."
Anencephaly is a fatal birth defect which occurs when the unborn baby's neural tube doesn't form properly.
Erin desperately wants to carry Freya to full term but she has a condition called polyhydramnios, a build-up of fluid in the amniotic sac, and she said that means she could experience a premature labour.
Still, she's taking things "day by day" and she said Freya's baby shower "definitely lifted my spirits" as well as raising vital funds for a worthy cause.
Around 60 people attended the event in the Limavady bar Granny Annie's. "It was mostly friends and family but a lot of people popped in," Erin said.
"We had a bucket on the way in to the baby shower so people could just throw in money. We had a raffle as well. We had so much to raffle, such as vouchers, because so many people had given us stuff."
Most of the money will go to Every Life Counts, a support network for families whose unborn child is diagnosed with fatal foetal abnormalities, but £1,500 is for Precious Life and there will be some for another support group, Shine.
"I'm feeling a bit better about myself since we had the baby shower," Erin said.
"We've managed to raise money and awareness and we had a really good time doing it so we've actually managed to make light of such a dark situation.
"We're happy with that. It doesn't take away the pain or frustration but the fact that we've been able to do that is really good for our moods. It's just so good to give something back."
Erin has back pain at present and is "having difficulty getting around" but she's been bolstered by the messages of support she's been getting from all corners of the globe.
"It's lovely that so many people have contacted us," she said.
"The response has been unbelievable. People are following my story across the world - from as far away as America and Australia. There's a lot of people reaching out who have experienced the same thing that Jamie and I are going through."