A Limavady couple are raising awareness of Perinatal Palliative Care after their baby was diagnosed with a fatal birth defect

Erin O’Hara and Jamie McCormick, who have been in relationship for the last four years, had been trying for a baby since last year and were overjoyed to discover they were expecting in May.

At their 20 weeks scan Erin and Jamie were given the devastating news their baby has a condition called Anencephaly and would not survive outside the womb.

“Jamie and I were heartbroken. We felt a pain that we had never felt before. A pain rife with anxiety and hopelessness. But most of all, we felt completely and utterly helpless.

“We sobbed, trying our absolute hardest to keep it together, not only for us, but for the baby. We tried, really hard, even though it felt as though our whole world had just been torn to pieces.”

Erin said she phoned her mother and her words were “we will love this baby no matter what. No matter what, this baby will be loved.”

The couple, who had planned to keep the sex of their baby a surprise, decided to find out what they were having.

It was confirmed they were having a little girl who they named Freya.

“My mum was right. Freya needs us more than anyone else. She is a vulnerable human being and she needs her mummy and daddy.”

Anencephaly is the absence of a major portion of the brain, skull, and scalp that occurs during embryonic development. It is a fatal birth defect which occurs when the neural tube doesn’t form properly following conception.

“We were assured by doctors that these things are unfortunate but they ‘just happen’ sometimes and no one knows why,” Erin said.

The couple were advised that termination was an option as there was no chance of survival. However, Erin said this was something she couldn’t do.

“I would like to carry Freya as long as possible but having a condition called Polyhydramnios, a build up of fluid in the Amniotic Sack, means I could end up going into an early labour. It has been difficult planning for the future as it remains uncertain.

“We planned her life not knowing we would have to plan her funeral. My main way of coping has been to stay positive. I’m not sure how I do it, but I just do. As a mother I feel that I have to put my baby girl’s needs before my own. I am really trying to be positive for her.”

Erin penned a letter to Freya and after sharing it on Facebook it has gone viral.

“I think that a lot of women who receive this diagnosis may be scared and think that a termination is the only way out. That is why I want to focus strongly on sharing the perinatal and palliative care that we and our daughter receive.

“There is an amazing amount of support out there for parents who embark on this journey and should anyone ever find themselves in our shoes in the future, I hope they find comfort in knowing just that.

“We are making the most of her short life, celebrating it in such a way, as her story has touched the hearts of many and we hope it will continue to do so.”

The couple are holding a baby shower for Freya this weekend to fundraise for Every Life Counts and Shine who have helped them through this difficult period. The couple said they do not know how they would have coped without the support of these charities.

“It is all about trying to make the most of our time with her. She is an active little baby and we cherish every kick.”

The baby shower will take place tomorrow (Saturday), November 10 in Granny Annie’s, Limavady. Alternatively donations can be accepted cia www.gofundme.com/freyas-baby-shower-for-charity