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Dublin: 18 °C Saturday 25 May, 2019
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'I cannot save my daughter, and it destroys me. The one kindness we can do is shield her from pain'

An Irish couple who are expecting a baby, and who received a diagnosis of fatal foetal abnormality, write about their ordeal for TheJournal.ie.

Various

Jane’s story*: 

As I sit here writing this, my baby is dying inside me.

We were told at our 20-week scan that our daughter has a serious condition and that she was unlikely to survive.

We were and are completely devastated. She is our first baby; she is so wanted and so loved.

Hoping for a miracle

After we got this horrendous news, we made a decision to see what the next weeks would bring and hope that by some miracle she might improve. We booked to go back to the hospital for a scan at 24 weeks with another consultant who could give us a second opinion.

In those intervening four weeks, we struggled to come to terms with what was happening. We waited, and we cried. We decided that if this was the time we had with her, we needed to create some happy memories. We took her to places that we would have brought her as a child. We read her poetry and stories every night. Our friends and family rallied around us. They too are heartbroken. They don’t know what to do or say.

Week 24 arrived, and I hoped that we would get some good news. Surely we deserved for something good to happen. Nothing good did.

We found out that she had dramatically dis-improved and whatever slim hope there might have been had now disappeared.

Her condition is fatal. Her heart is failing, and it is unlikely she will make it to term. If by some miracle she did, the birth would be very traumatic for her. She would die quickly, gasping for air.

We can’t allow this to happen. We love her and do not want her to suffer in any way. The best case scenario for her and us is if her heart will stop inside me.

Options

So these are our options: I continue to carry my baby and wait for her to die, or I leave my family and friends, get on a plane and end my baby’s life, suffering while far from home and everything familiar.

If I take the option of continuing with the pregnancy, my baby will continue to grow but will do so abnormally. All the while, my belly will grow. People will ask about my due date and if I’m all set to meet my baby, not knowing of course that I will never know her. They might ask how I’m feeling. What do I tell them?

I can’t participate in the world. I’m afraid to leave the house in case I bump into a neighbour. I can’t go to work.

I’m suffering, my partner is suffering, and our family and friends are suffering. How do I continue for three more months? Please tell me. This is the option this country would have me take.

If I take the second option, we will book a flight to the UK for a termination. At this moment the idea of even getting a taxi to the airport is too much to bear.

I don’t know what lies down this road. Will we stay in a hotel? What if I am unwell after the procedure? How do we bring our baby home? Will we be able to bring her home? Will our families ever get to meet or hold her? Will we get any support? How will we pay for it? Why are we being forced to leave to do this?

A fair option would be to allow a grieving mother and father to have this choice here, in Ireland, in the arms of our family and friends. We want what’s best for our daughter. I would give up everything I own right now just to have that choice.

This impossible situation is being made even more impossible for us by potentially forcing us to go to another country to save our baby, our families and friends and ourselves from so much suffering.

Offensive fabrication

I saw a pro-life advocate on the TV the other night fabricating a quote the new HSE bereavement guidelines. She said that “abortion actually causes more emotional distress in the long term and the short term than actually carrying through with a pregnancy.” A fact which doesn’t appear in the guidelines anywhere.

The fabrication was doubly offensive: for the untruth, and for putting words into the mouths of women who have gone through this nightmare (whichever decision they made in the end).

This is our experience, our journey, our baby and my body. These people have no clue about our suffering.

If they cared about my baby, as they say they do, they should support us ending her suffering and ensuring she is not born to die in pain within minutes.

My mental health is suffering. I look down at my bump all day long and think of my daughter dying inside me. This is so cruel.

I hope nobody who reads this ever feels this pain. For those of you who have, I’m so sorry. For those of you who will, who may face this awful decision, I’m so sorry.

For everyone else, I want you will sit back and close your eyes and walk in my shoes. Imagine you are on my journey and try to understand the pain the Eighth Amendment is causing.

John’s story*:

My partner is six months pregnant, and we hope our unborn daughter will die soon.

That sentence is appalling to write, but it’s the truth. The alternatives are worse.

Our daughter has a disease that means several of her organs aren’t developing. She will die soon after birth — a day or two at most, we’re told, even with ‘aggressive’ interventions.

When we learned this several weeks ago, my partner and I just … stopped. We’re in limbo. Days run into each other; some are better, some are worse. We visit the hospital for more tests because this disease might also affect our future children. We try to work. But mostly, we wait for the inevitable.

There are three ways it can happen.

Lives to term

The first: she survives to term, is born, and dies soon afterward.

The language used when discussing death is so calm. ‘She dies soon afterward’ sounds gentle, like passing away in your sleep.

Here’s a more accurate description: she will leave the womb and the umbilical cord that kept her alive. She will enter a cold environment where her body does not work. Her kidneys and stomach will not function; she will not be able to digest. Her lungs will not be developed; she will not be able to breathe.

And, as loving parents, her mother and I will choose whether she suffocates quickly, in our arms, or slowly, not quite sustained by tubes and wires and a transparent plastic box.

This is unacceptable to me. To put her through this suffering is cruelty.

Get a termination

The second: we travel to the UK for a termination, because Ireland refuses us the mercy of letting her go gently.

I cannot save my daughter, and it destroys me. The one kindness we can do for this little girl, who will never know us, is to shield her from pain. If we choose to do that, we must leave our families and friends, the hospital staff we know, everyone and everything that saved us from shattering entirely.

We must travel to a foreign country and deal with the horrible banality of the logistics on top of the emotional trauma of her death. Costs. Paperwork. Hotel reservations and passport control. All because our country refuses to allow us to shield our daughter from pain.

Dies in the womb

Which brings us to the third option: she dies naturally in the womb because, even with nourishment and oxygen flowing through the umbilical cord, her little body can’t cope.

One of these outcomes will become a reality in the next three months. This is why we hope our daughter dies soon. It is the best of a trio of horrible options: for her, for us, for our family.

When we ask to repeal the eighth, so much is said about the right to life of the unborn. I can’t speak to many aspects of this debate. All I can tell you is our situation. All I know is that the Eighth Amendment delivers not a right but a sentence, pronounced by every citizen of Ireland, that tells my tiny girl she is obligated to suffer.

*Names have been changed for publication as the authors wish to remain anonymous. 

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