Belfast Telegraph

I wanted to love her as long as we could: Northern Ireland mum's determination to make pregnancy special despite fatal condition

Warning: Distressing content

A personalised babygro and baby scans of Freya
A personalised babygro and baby scans of Freya

A Northern Ireland mum has done all she could to ensure her baby's life would be cherished, despite being told that her daughter had a fatal condition.

Erin O'Hara's daughter Freya lived for just two minutes after being born on December 7, 2018.

Despite learning early in her pregnancy that Freya would not have a long life, Erin was determined to make the time she had meaningful.

The 24-year-old and her partner Jamie McCormick were told at the 20-week scan that their baby had a condition called anecephaly, meaning the skull had not properly formed.

Erin attended the scan with Jamie and her seven-year-old son Josh and said she had no idea anything was wrong.

Limavady couple Erin and Jamie had heard their baby's heartbeat during the 12-week scan and after recently moving in together were preparing for life as a family.

"We were sitting on the bus, debating whether or not to find out the sex, I wanted it to be a surprise, but Jamie fancied doing a gender reveal," Erin told the Daily Mail.

"In the hospital treatment room, Josh sat in the corner playing a game on my mobile as the scan started.

"The sonographer was chatting away, pointing to the screen, showing us our baby's wee lung and heart. Then suddenly she went quiet and her face changed.

"I felt my blood run cold… I just knew something was wrong."

Erin O'Hara with partner Jamie McCormick
Erin O'Hara with partner Jamie McCormick

Despite being told there was no chance of survival and that abortion was an option, Erin was determined to continue with the pregnancy, and vowed to help raise public awareness of the untreatable condition.

Erin and Jamie vowed to make the pregnancy special and create as many memories of their daughter as the could in their short-time together.

The couple told the nurse that they still wanted to know their baby's sex, despite the heartbreaking news.

"When they told us it was a little girl, our hearts broke all over again. I'd always wanted a wee girl. We named her there and then… Freya," Erin said.

"I told the doctor I was determined to love this baby, no matter what. I wanted to keep her for as long as we could.

"I told Jamie that I believed Freya had been given to us for a reason. I told him I wanted to enjoy every moment of having her inside me."

Erin O'Hara
Erin O'Hara

As the pregnancy progressed Erin began to feel Freya kicking inside of her and decided to throw a baby shower.

"I was going to miss out on so much, but having Freya alive and kicking inside me was one thing I could still celebrate," she explained.

"My parents and Jamie agreed. We wanted to make the most of this wee baby while we could."

The couple invited their family and friends to the baby shower and asked them to make a donation to baby charity 'Every Life Counts' instead of bringing gifts.

"I didn't want anyone to feel awkward, so I put a post on Facebook explaining our intentions," Erin said.

"The response was overwhelming, about 70 people showed up. Jamie decorated the room as a surprise for me, filling it with flowers and 'baby girl' balloons, with a gorgeous three-tiered cake and a sign spelling out Freya's name.

"I was 28-weeks gone and I had a sizable stomach, Freya was well and truly making her presence felt. Our friends flocked to take selfies with my bump."

Erin went into Labour two months early in December and Freya was born shortly after 9pm on December 7 weighing 2lb and 4oz.

"She opened her eyes and gazed straight up into mine. She curled a tiny hand around Jamie's finger," Erin said.

"We told her that we loved her and that we were there for her.

"Two minutes later she stopped breathing. Our angel baby had grown her wings."

After passing away Freya was placed in a cuddle cot to keep her body cold and the family took her home.

"Having her in our house was the most precious four days of my life. Every night, when we went to bed, we set up Freya's cuddle cot beside us," Erin said.

"Josh was in awe of her, gently picking her up and rocking her like a doll.

"She's your angel sister," I explained to him. "She's come to visit us and then she's going to live in the sky."

"All our family and friends came round to meet her, taking turns for kissed and cuddles before returning her tiny body to the cot."

Nine days after she was born Freya was buried in the local graveyard. The family have named the plot "our wee love garden" and visit every week taking fresh flowers and toys.

Since Freya's passing Erin has dedicated herself to raising awareness of anencephaly.

She has also started a project called "Angel Notes Around the World to help" bereaved parents from around the world send notes of love and support to each other.

Erin and Jamie received around 50 notes from well-wishers from around the world after an appeal on Facebook.

"Our story is positive, we loved Freya, we cherished every day of my pregnancy, and she'll always be in our hearts," Erin said.

"When I realised how much receiving the love notes had lifted my spirits, I wanted to share that with other bereaved parents. They can honour their children in an inspired and creative way too.

"The idea is that you send your photo with a note of love, and receive a note of love in return," she says. "Losing a child is so lonely, it's good to know there are others out there who understand how you feel."

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