Belfast Telegraph

'My baby won't survive after birth but I can't bear to have abortion,' says distraught mum Erin

- Young mum tells of heartbreaking moment she received diagnosis

- She hopes decision will raise awareness of incurable condition

By Claire McNeilly

A pregnant mother is carrying her seriously ill unborn baby to term - even though she knows the child will not survive outside the womb.

Erin O'Hara (24) from Limavady said she was advised on two separate occasions to consider aborting the unborn girl, who has untreatable anencephaly, but she could not countenance the idea.

Having reached 26 weeks of pregnancy yesterday, and after declining to travel to England for a termination, Erin is preparing for what she admits will be a traumatic few months until the baby - who she has named Freya - arrives.

In the meantime, the mum to six-year-old son Josh is throwing all her efforts into preparing a baby shower for her unborn infant on November 10.

In a heartbreaking interview, Erin revealed that she and Jamie McCormick (23), her partner of almost four years, had planned on having a child together and she said that neither of them could bear to end the pregnancy.

"There was no decision to make," said Erin.

"Jamie and I have been utterly distraught since Freya's diagnosis a month ago and it has been undeniably difficult to come to terms with.

"People told me termination was an option, but we couldn't do it.

"We want this wee baby more than anything in the world and we will love this wee baby, no matter what."

In the past other women, including freedom of choice campaigner Sarah Ewart, have left Northern Ireland for an abortion after being told their baby couldn't survive, but, without being judgmental, Erin said it wasn't the route for them.

"Two weeks ago I'd have flown to England had I wished to terminate Freya," she added.

"But it's not something I could ever consider. I'd have sacrificed the rest of my life to look after this child, this special wee person, even if she needs round-the-clock care. Even if our future remains bleak and uncertain.

"We planned Freya's life, not knowing that very soon we would be planning her funeral."

The clerical officer described how her world collapsed when the 20-week scan last month revealed the devastating news that the baby she was carrying had incurable anencephaly - the absence of a major portion of the brain, skull and scalp that occurs during the development of the embryo.

"I'll never forget the way the friendly smile on the sonographer's face withered into a faint, frail frown," she said.

"Then she just went really quiet for seven, maybe 10, minutes. The sadness in her eyes was apparent but I still didn't expect her to say what she said: 'There's a problem, it's a big problem'.

"When she said anencephaly, I didn't know what that `ctually meant.

"I didn't expect her to say it was fatal, that these babies don't tend to make it outside the womb; that they tend to die. Suddenly my chest tightened until I almost couldn't breathe. It took me a couple of minutes even to look at Jamie.

"We were in shock. I immediately felt so anxious and I was covered in pins and needles.

"I felt like I was floating around the room and it was horrible."

Erin said she was told by the ultrasound technician and the doctor that a lot of mothers in her situation have gone on to have abortions, although she was also reminded that terminations are illegal here.

"It's not only my pregnancy, it's Freya's and her daddy's too," she went on.

"Some days I can't even begin to fathom how this could happen to us. There are days when I haven't got up at all.

"I feel Freya roll and kick inside me all the time, reminding me that she's very much alive."

Calls have been made at both Westminster and Stormont in recent times for refor m of Northern Ireland's strict abortion laws, but that's not something that concerns Erin.

Rather, she and Jamie, a telephone adviser, have decided to do their utmost to use Freya's condition to help raise awareness of anencephaly.

"When we got the scan to confirm that she has anencephaly, I could see her wee head, which was so small in comparison to the rest of her body and you could see the eyes looked big and where her wee head stopped," said Erin, whose son from a previous relationship was born with breathing problems, weighing just 6lbs, and spent three days in a neo-natal ward.

The couple only named their daughter as a result of the devastating news on September 20 that has turned their world upside down.

She said: "We weren't going to find out the sex, but once we received the diagnosis I asked what it was and we decided on Freya, as that was the one we both liked from a list of girls' names that we'd previously looked at."

Erin and Jamie have drawn support throughout their diagnosis from Every Life Counts and the pair have organised the forthcoming baby shower in aid of the Dublin-based charity.

"There will be food, cake, balloons, pints and hopefully plenty of laughter and smiles," said Erin, who has joined various support groups to get her through the days ahead.

For now life remains far from easy and the future can often seem daunting for them, their family and their friends.

"It is so hard; I seem to have a lot more bad days than good days," Erin said.

"Anencephaly is such an unpredictable condition and a lot of the babies tend to die before they make it to birth. But there are quite a lot who've lasted a couple of days to a couple of weeks, and even a couple of months in some cases."

She added: "I would love to be able to spend a bit of time with Freya.

"My due date is February 4, but they're expecting me to go into labour before that. These babies normally come earlier, for some reason."

As her pregnancy progresses, both Erin and Jamie know they can only hope for the best and prepare for the worst - and there have already been many tears.

"When we were told Freya's condition, her daddy grabbed my hand and we both sobbed," she recalled.

"We were trying our absolute hardest to keep it together, not only for us, but for Freya, and her big brother. We tried really hard, even though it felt as though our whole world had just been torn to pieces.

"I think about her every day. Some days I can't even begin to fathom how this could happen to us, how it could happen to our sweet baby girl."

Erin said a special room has been reserved at Altnagelvin Hospital in preparation for their daughter's birth.

"We haven't a clue what's going to happen," she said. "We just want to spend some time with her. There's a bed for me, a bed for Jamie and somewhere for Freya to sleep as well.

"If she's born alive there'll be something set in place for us to ring family straight away, so everybody can come up and see her while they can."

Babies diagnosed with anencephaly

Anencephaly is a serious condition in which there is virtually no brain and most of the skull vault is missing.

It is invariably fatal. Without intervention, a full-term anencephalic baby dies shortly after birth.

If an ultrasound scan is performed after about 12 weeks of gestation, the anomaly is fairly obvious.

At 18 to 20 weeks, when most routine scans are performed, it is almost impossible to miss anencephaly.

The incidence of anencephaly is rare, ranging anywhere between one and six per 1,000 deliveries.

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