Waiting for my own child to die, while looking like I was expecting a baby, was hell

We shouldn’t have had to wait for her to die before we could show her the respect she deserved

Alex Patricia Cullen-Delsol.

Alex Patricia Cullen-Delsol.

 

There are many reasons why women terminate their pregnancies, or continue with them in challenging circumstances. In advance of the referendum on whether to retain or repeal the Eighth Amendment on May 25th, The Irish Times has asked readers (women and men) to share their personal experiences. This is one of the stories we received.
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In April 2015 my husband and I discovered we were expecting a baby at Christmas. We had a seven-year-old daughter and a one-year-old son, and this was our bonus baby.

At 22 weeks, after a worrying anomaly scan and an amniocentesis, the procedure used to detect chromosomal abnormalities and genetic disorders, we got a phone call that every parent dreads. “It’s bad news. Your baby has complete trisomy 13. She is going to die.”

My world fell apart and to this day has never come back together.

How was I going to cope with losing a child?

How could this happen to us?

How were we going to live the rest of our lives with the knowledge that there would always be someone missing from our family, the little daughter whose life we had already lived out a hundred times in our heads?

We left the consultant’s office the next day clutching a piece of paper with the phone number for Liverpool Women’s Hospital and a diary that had my questions scribbled in it, all answered with “No”.

I asked to be induced, like I had been for my second baby. I wanted to deliver my baby, hold her, cuddle her, bring her home to meet her brother and sister, plan a real funeral and take care of her. I didn’t want to spend days on the phone booking appointments, reading my medical notes down the phone, telling strangers the horror of my daughter’s awful condition over and over again. I’d just found out my child was dying. How was I supposed to go about booking flights, organising childcare, finding out about cremations and couriers? Not to mention the cost – where were we going to get more than €2,000 to pay for it all?

How would I explain it to our kids? Our son had never spent a night away from home, and our daughter was smart and old enough to realise something was very wrong. Telling her that her little sister was going to die was the most distressing moment of my life to that point. Looking into her little face, her huge eyes filled with horror and disbelief, I knew I couldn’t leave her here and go to Liverpool to deliver and leave my other daughter there.

So I waited.

My daughter’s movements grew weaker and weaker, further and further apart. The midwife told me there would come a day when I wouldn’t feel another kick. Then I would come in for a scan, to confirm there was no heartbeat, and then be induced and have a stillbirth. I just had to wait for that day.

Every minute was torture. I had panic attacks and nightmares, and deteriorated into a complete mess. The agony of waiting for my own child to die, while looking like I was expecting a baby, was hell. “How are you? When are you due? What are you having? Are you all organised?”

I stopped leaving the house, stopped washing myself, couldn’t care for my kids. I spent most nights lying awake, crying into a pillow so I wouldn’t wake the kids.

I planned her funeral in my head, the songs and poems. I forced myself to look through pictures of stillborn babies, and babies with her condition, so I would not be shocked or frightened by her appearance.

Twice I was sure she had died. Twice I mourned her loss. Twice I lay awake all night long, feeling the grief of a bereaved mother. And twice she managed a feeble kick after 12 or 14 hours of stillness and I knew she was hanging in there, weakening and dying, but not gone just yet.

On September 23rd I woke after almost a full night’s sleep. I felt complete stillness and knew straight away she was gone. I knew, without a doubt, my little girl was at peace. A scan confirmed her heart was no longer beating.

Once again I walked out of a hospital clutching a piece of paper, a ream of photos from her final scan. This time I was the one in control, though. I decided when I would come back for an induction. I went home and told my children, calmly, tearfully, but finally back in mammy mode, no longer a passenger in my own body.

I went and bought a nightie for the hospital, an outfit for my baby daughter to wear. Packed my children’s bags, reassured them I would see them soon and my parents that I would manage over the next few days, whatever was to come.

The induction was long, scary and painful.

On September 25th Alex Patricia Cullen-Delsol came silently into the world.

All the pain and fear melted away as I looked into her little face. She was beautiful, warm, peaceful. Love filled me up. My baby was in my arms and I could finally take care of her, protect her and show her the respect she deserved. But neither of us should have had to wait for her to die for that to happen. We both needed so much more than that.

While the Eighth Amendment is in place there is no other option for families like mine in Ireland. We can never access the medical care and compassion we need here until we repeal the Eighth and bring in legislation that stops punishing tragedy, stops treating women with cruelty and inhumane expectations, and acknowledges that we are the only people who can know what we can cope with, what we need and what our babies need.

I keep hearing about how I am, sadly, a “hard case”. I am not worth a change in the law because there aren’t enough women and families like mine, and punishing “young ones” for being “irresponsible” is more important than preventing horrific pain and suffering for families like mine.

On May 25th the whole country gets to decide if what I went through was bad enough to warrant change.

My health is not an abstract moral question, it’s not something the whole country should have a say in, it’s not communally owned.

But unless enough people care about me, and every family that gets such horrendous news, we’ll continue, as a country, to torture and punish women.