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'No matter what anyone says to you, you're a mammy and a daddy now'

TDs are once again being asked to legislate for terminations for medical reasons.

“WHO WOULD MAKE a woman grow a baby just to watch it suffer and die? It’s barbaric and it really has to stop.”

That’s the plea of one woman who had to travel to the UK to terminate her pregnancy for medical reasons.

A number of women from the support group TFMR Ireland will tell politicians of their journeys from conception to mourning at a briefing in Leinster House this afternoon.

A documentary by Luke McManus, featuring some of the couples and women who lost their babies, will be shown ahead of the launch of Clare Daly’s proposed amendment to the Protection of Life During Pregnancy Act.

The group is hoping for cross-party support to allow for the Bill which would give hospitals permission to terminate pregnancies where the babies are incompatible with life.

TDs and Senators will hear from six families, all of whom had to travel to the UK after receiving fatal diagnoses in Irish hospitals.

Conception

“Babies are precious in our families… It was a time of great excitement,” remembers the Edwards, while the O’Donnells recall “shopping for buggies and cots and everything”.

“We were blissfully unaware that anything could be wrong,” they say in the documentary.

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“It was a Tuesday and the scan was at 5.30pm so Dave could come and we wouldn’t miss work,” another woman reveals.

Ruth Bowie, one of the founding members of TFMR, says: “In my gut, I felt there was something wrong. But then I thought I was being paranoid. I’m a nurse and sometimes we think the worst. I was kind of looking forward to being reassured.”

The diagnosis

“I went in on my own at 26 weeks. The doctor went silent,” recalls Sarah McGuinness.

Other women recall similar moments.

Straight away, I saw her face. I knew something was wrong.

“The tone changed and the pace changed.”

The sonographer said I needed to call my husband.

“Rightly or wrongly, they started to tell me before John [my husband] came. They told me my child had no brain and no skull.”

‘I’m really sorry it’s bad news guys.’ She went through all the problems – no kidneys and fatal spina bifida, one of the more extreme cases she had seen.

“She’ll die because her heart will give out under the strain of your body, crushing her, basically – or in labour in distress, or if she was to survive those two cases, she would have been born in a lot of pain. They would have the pain team there and the palliative care team to medicate her. She would last minutes at most.” 

It’s completely incompatible with life. You need to go home, think about what you need to do and come back to us in the morning. We can talk more about it then.

What happened next?

The couples will tell TDs of their shock at finding out that they would be required to leave the country if they chose a certain treatment path.

The doctor said we had two options – you can continue and we will scan you weekly. Or else you can travel. “

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Sarah remembers, “At this stage, I was 26 weeks. I was six and a half months pregnant, I was quite big. My husband just said, ‘So will Sarah get a section then?’ He wasn’t even thinking about his wife being put through labour. I was thinking the same. But she just say, ‘No’. And I went, ‘Induced?’ and she said, ‘no’. ‘As it stands you will have to go to full term’.”

Gaye Edwards adds, “We felt like fugitives… we really did. We didn’t want anyone to know where we were going in case they tried to stop us. We had to leave the jurisdiction obviously. That phrase made it very clear to us that it wasn’t available in Ireland.”

The travel

The women and their partners discuss how the travel to the UK heightened the tragedy for them and their families.

We went on the boat at the 2.30am sailing. My partner drove up through the night to Liverpool. He was awake for 24 hours before we got there.

Ruth adds, “We went through checking in, through the security, feeling rotten, going and waiting on the gate and the plane to board. You see business men, people going on weekends away. It just felt so wrong to be in that situation.”

The birth

They brought us in to do the procedure where they’ll stop her heart. That was really sad. It made it really definite. This is really happening. They were really kind. They took their time. It was quick in the end. She said, ‘She’s gone now’. That was a hard moment.

Julie remembers, “It’s kind of like a normal labour actually. Which is nice in a way that you get to have a natural birth. I remember being really scared. Little things you hadn’t prepared for. We had a little outfit for him.”

Another touching memory shows a father having a moment with his daughter.

She was born then at nine o’clock in the morning. I still remember that you could hear people going to work, and you could hear the traffic. It was very peaceful when she was born. She was born very suddenly in the end.
I didn’t realise she was so ready to be born. I had sent the midwife out for something, when she came back she was born. Dave had caught her. Which was nice, I suppose, that her Dad had delivered her. He cut her cord.

The Edwards were also allowed some time with their newborn son.

“When Joshua was born and the midwives dressed him. We brought him back to the room in the hospital. We spent time as a family and a meal was brought in to us.

I remember one of the midwives said to us, ‘No matter what anyone says to you, you’re a mammy and a daddy now’. That was really, really important to us. 

“We didn’t know what he was going to look like. He was beautiful. He was almost perfect. He was tiny. We spent a few hours with him,” Julie says on the documentary, in tears.

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Ruth, who had her procedure carried out in a clinic, had a less empathetic experience.

We were there for about an hour, maybe, and they said, right you can go now. If I had been in my right mind, I would have just said we had nowhere to go because our flight back isn’t until tonight. I said OK but then we had nowhere to go.

“So we just got our taxi into the centre of Birmingham and we literally just wandered the streets and went from coffee shop to coffee shop. I remember at one stage we contemplated going to the cinema so we could sit down somewhere.”

The aftermath

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They did everything they could to make it bearable but there came a point we had to leave the hospital and leave him behind. That was the hardest thing.

Many of the women point to the fact that they have other children that they have to leave behind in Ireland to travel for the procedure.

I discharged myself from hospital. I just wanted to get home to my own bed, to my daughter, to my family. Whereas, if you were able to do it in an Irish hospital, you wouldn’t feel the need to rush back as fast.

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The documentary also hears from the mothers’ husbands and partners.

“To go back to an awful hotel room in the evening? That was the worst pain,” says James Burke.

Then flying back on a cheap flight from Liverpool to Dublin on a Saturday morning with hen parties celebrating and having a great time while we’re just after going through the worst period of our lives? That was the worst thing ever.

No remains

Families also said that they felt an added pain because they had to leave their children in the UK because of restrictions on carrying human remains.

“All our family and friends would have loved a proper ceremony and would loved to have supported us. But that wasn’t really an option,” explains Sarah. “With Liverpool, there is an issue with bringing a body home. All of that really compounds the absolute misery and heartache that couples have to go through.”

Julie and her partner flew back for the cremation of Aidan but, again, had to leave him there

The ashes were posted back to Dublin. We weren’t allowed bring them on the plane and carry them with us.

The Edwards also don’t have a grave for their son.

His cremated remains were delivered by courier a week or two after he was born. A courier van arrived at the door with a jiffy envelope with a cardboard box where his remains are.

The fight

“I can’t rest. I even feel I can’t get over my own anger until it is changed because it’s happening to people every week and it’s totally unfair,” says Ruth.

Sarah adds, “There could be 1,000 couples a year that travel. But we can’t get statistics. Because once you leave the care of your maternity hospital, you are not on the records anymore.”

“Government in the last 13 years has consisted of pretty much every major political party,” says Edwards. “They’ve all chosen to ignore this. They’ve all chosen to pretend that it’s not really happening.”

The O’Donnell’s bring up another issue important to the TFMR campaign.

“Abortion is a conversation and there are two sides to it,” they say. “You can understand the pro-life and the other side of it. This is completely separate subject that needs to be given the consideration it deserves.”

Gaye Edwards also highlighted how long this situation has been unchanged.

When I saw the other women from TFMR appear on the Late Late Show and being on the radio and in the press 11 years after we had gone through ours, I felt a certain amount of shame that we hadn’t been able to change things for them.

Luke McManus / YouTube

What’s happening today?

Clare Daly will introduce her Bill on Friday which would, if passed, enable provision for terminations of pregnancy to be permitted in cases of fatal foetal abnormalities.

Ahead of the Dáil session, Daly and TFMR Ireland have invited TDs and Senators to watch the documentary and to vote for the amendment next Tuesday.

“Many TD’s and Senators across the parties have already expressed support for a change in legislation on this issue,” TFMR has said in a statement.

“While we are grateful that so many politicians have gone ‘on record’ as supportive, expressions of support for change without a willingness to enact that change is actually only adding insult to injury.

“We continue to maintain that this is not a debate about abortion or the right to life of the unborn,” they continue.

“This situation only arises where the right to life cannot be engaged because of a medical condition suffered by the foetus such that it is incompatible with life outside the womb. The proposed amendment includes a provision that two suitably qualified medical professionals (an obstetrician and a perinatologist) jointly certify in good faith that the foetus in question is suffering from a fatal foetal abnormality.

“We feel that this, together with the fact that in reality no parent will undertake a medical or surgical procedure to bring about an end to their pregnancy on the basis of a single medical diagnosis offers sufficient safeguards and is in keeping with the constitutional requirement to protect life ‘as far as practicable’.

“This amendment, if passed, will enable parents to discuss the options available to them with their own medical teams. If they then make the decision to bring the inevitable and tragic end to their pregnancy forward, this choice would be available to them.

“By enacting this Bill, the stigma associated with these decisions will fall away, parents will be able to deliver their babies in Ireland with their own medical teams and with the support of their families around them.

“They will no longer have to ‘flee the state’ feeling like fugitives. They will not have to smuggle their baby’s remains back into Ireland or else leave them behind either to be buried abroad or cremated and delivered to them by courier.  Families will be able to have their own funerals which will enable them to grieve normally with the open support of their families, friends and community.”

Opinion: A fatal foetal diagnosis is nobody’s fault – the deliberate lack of support by the State is.

Medical Terminations: ‘Ours is a very specific, heartbreaking and clear-cut case’

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