I Was Forced to Carry an Unviable Fetus to Term. This Is My Diary
When doctors told Claire Cullen-Delson that her pregnancy wasn't viable due to a chromosomal disorder, she requested a termination—but was denied it under Ireland's abortion laws. She documented her experiences in a diary, which she shares here.
All illustrations by Calum Heath
This week, Ireland votes on whether it will repeal the 8th Amendment, which denies women the right to an abortion in all circumstances except in cases where her life is in danger. In the run up to this historic vote, Broadly will be giving a platform to the victims of this inhumane law and the activists fighting for change. You can follow our coverage ahead of Friday's vote here.
In 2015, Irish mother-of-two Claire Cullen-Delsol found out she was pregnant with her third child. It was an unplanned pregnancy, but Cullen-Delsol and her husband Wayne became excited about the prospect of another child.
Scans revealed that the fetus had a rare chromosomal disorder called Patau syndrome, meaning that it would not survive for long beyond birth; it would most likely to die in the womb. After receiving the diagnosis, Cullen-Delsol decided that she would rather have a termination rather than endure months of carrying a doomed pregnancy. However, Ireland's abortion law prohibits abortion in all circumstances except where the mother's life is in danger, meaning that even fetuses that will not survive birth must be carried to term.
As a result of her traumatic experience, Cullen-Delsol became an ardent pro-choice activist. Today, she is the director of Terminations for Medical Reasons, a pro-choice campaign group she set up to lobby for change to Ireland's restrictive abortion laws.
"Campaigning for change for other women was something I did to come to terms with my loss," she told Broadly. "I can't heal while I know that every week two or three Irish couples have to travel to the UK to terminate a much wanted, but dying baby. And who knows how many more people are at home, suffering like I did?"
"My greatest fear," Cullen-Delsol adds, "is that my daughter will have to experience what I went through, and this country will treat her as badly as it treated me."
The following are extracts from the diary that she kept during her third pregnancy, and are reprinted with her permission.
13 August, 2015
It's a beautiful sunny day. I tear home from work to pick up Wayne, my mam, and the kids before heading to Waterford Hospital for my scan.
The midwife brings me into the room alone first to check the basics before bringing in everyone else. We make small talk for what seems like ages before I ask, offhandedly, if everything looks all right. “No," she responds matter-of-factly. "There are a few things I actually need to look at.”
After a few minutes she starts to gently and calmly point out huge cysts on the placenta, missing bones in the baby's face, and issues with brain development. We move into another room with a better machine and I ask her to fetch my husband. My mam brings the kids to the hospital cafe while we wait for the second scan.
Wayne grips my hands as we sit in silence. As the midwife scans me, I study her face for a flicker of a smile or relief. There's none. She points out more things: bilateral clefts, overlapping digits, underdeveloped cerebellum, placental cysts, no observable stomach, kidney issues, and spots on the baby's heart.
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I listen in terror with tears running down my face. Eventually it finishes, and we leave with a referral to a fetal medicine specialist at Holles Street hospital. We walk back out into the sunshine. I'm shivering.
At home, I Google "chromosomal disorders." "Rarely results in live births," I read. "High mortality in first month. Few infants survive first year. Incompatible with life. Fatal."
I want to die. I want to curl into a ball and be swallowed by the earth. My whole world is changed. Nothing feels real anymore. I don't know how to deal with this. My little person may not make it to this world and we may lose a child. I don't know how to cope or live with this. I want to keep this baby safe forever.
15 August, 2015
It's the day of our appointment at Holles Street. The past few days have been a blur of tears, anger, no sleep and no showers.
At the hospital, the doctor is forthright and matter-of-fact. He agrees with some of the midwife's first findings: the stomach, the cysts, the extent of the cleft lip. He reserves judgment on whether it's a chromosome disorder. I have an amniocentesis and we go home to wait. I cling to hope.
21 August, 2015
Very long, stressful day. We're expecting the amniocentesis results to be back by now, but no one calls. At 4PM I start calling the midwife at the hospital. No news. We'll have to wait until Monday. I'm gutted. I'm so wrecked from it all now. I'm exhausted from not sleeping and I'm starting to see the pressure on Wayne's face too. it's going to be a tough weekend.
23 August, 2015
I'm sick of people telling me to stay positive or rub my bump. Feel so angry. Keep lashing out.
24 August, 2015
I wake up positive and hopeful, even though I slept very little. I shower and even put on makeup. I distract myself by going shopping. At 3 PM I finally call the midwife. She calls back at 4.20 PM. It's not good. The baby has Patau syndrome, meaning that it has three copies of chromosome 13 in every cell in her body. It's not compatible with life and normal development in utero. The baby won't survive.
My whole life falls down around me. I grab Wayne's hand as he collapses. His head is in his heads. He's devastated. I feel my heart stop and my stomach drops. Cold dread seems to pour down my back and I cry immediately. After I've cried all I can, we sit there in stunned silence.
We start to let people know. I can't bear to hear my mam's voice as she hears her granddaughter will die, so Wayne calls her. I hear her heartbroken gasp over the phone and I'm crushed again. I text my brother. I can't bear to speak to anyone.
All of a sudden it hits me again. I can't describe it. The pain and grief are so complete it feels like a lead weight. I literally try to push it off me. It feel physical. I'm howling like an animal. "No," I scream. I'm clutching Wayne's shirt, begging. Eventually the howling pain passes to stillness. We hold each other for a little longer, then begin to prepare for the kids coming home. When they get back, we put our game faces on.
25 August, 2015
In the car, driving to Dublin, we eat breakfast rolls and make conversation. Wayne and I hold hands. The doctor very clearly and patiently explains the syndrome, its outcome, and our options. The baby will not live. It is unlikely to be born alive or survive beyond a few hours if she is. We can expect a late miscarriage or stillborn baby or, if the pregnancy goes to term, I'll deliver a baby who'll die in labour or soon after.
There can be no early intervention. Any action to bring on labour will be considered a termination and is illegal under Ireland's Eighth Amendment, which prohibits abortion in all circumstances except to save a mother's life. The doctor doesn't mention the option of traveling abroad for a termination until I ask. He tells me that the hospital is aware of a high standard of care at Liverpool Women's Hospital, but they can't refer me there. They can pass on information if I request it. No Irish medical professional can help me book a termination or arrange an appointment there. I have to arrange everything myself.
I'm so angry. I'm only 22 weeks pregnant. I'm going to have to stay pregnant for at least another 15 or 16 weeks. I'm going to have to deliver and then lose my child. In the meantime I'm going to have to go to work, drop the kids off at school, and deal with all the attention pregnant women get. "When are you due?" people will ask me. I can't cope with that.
But how can I go to Liverpool for up to a week? Leave my kids with family and friends, go to Liverpool, deliver a dead baby, say goodbye to her, and then get back on a plane to wait for her ashes to arrive in the post?
I don't want to terminate her. I want to deliver her. I want to hold her and say goodbye to her in her own time, not rush for a flight. I want my kids, parents and brother to meet her and hold her. I want my own bed. I want a funeral, not ashes delivered by courier. Her life means more than that. But so does mine. How can her rights and mine be equal under Irish law? She never had a chance at living. Every cell in her body had a tiny, catastrophic flaw, and she could never have survived outside of my body.
"I'm a grown woman. I have children, a husband, friends, a job. How is all of that somehow equal to a hopeless heartbeat in a dying body?"
I'm a grown woman. I have children, a husband, friends, a job. How is all of that somehow equal to a hopeless heartbeat in a dying body?
26 August, 2015
Today I had to tell my daughter Carla that her baby sister would die. It was the hardest moment of my life. Her face crumples up and she asks if there's any hope. She wants to believe, but I can't let her hold false hope. I look her in the eye and say, "No. The baby will die. There's nothing we can to help her." As cruel as it was, that's the kindest option I have available.
She sobs her heart out. I'd have done anything not to have to put her through that.
I have another appointment at the hospital. The midwife looks me in the eyes and tells me how sorry she is. The doctor comes in and tells me that there's no good medical reason to keep me pregnant, but there's no other option. He's sorry. He does another scan and prints enough copies for everyone in the family to have one.
I'm in town later that day buying schoolbooks and uniforms when I have another public breakdown. I know then that I'll never be able to cope with traveling to Liverpool. I can barely do the school-run. I can't face going to the supermarket. Even if we had the money for the flights and procedure, I wouldn't be able to handle the airports, buses, and hospital. The thought of it all makes me shake with fear. I'll have to wait.
10 September, 2015
I've been having nightmares about labour and birth for days. I wake up crying. Tonight I lie awake all night. I can't feel the baby move. Nothing. At about 6 AM I feel her wiggle. I cry with relief and fear.
11 September, 2015
Another late night. I stay awake Googling "induction after death of baby", and "preparing for a stillbirth." "Labour with a dead baby." What would my baby look like? Would I be able to hold her? Kiss her? How many more nights do I have to suffer, wondering if she's dead?
12 September, 2015
Wayne is at work when my mam rings. I've been crying at home at the kitchen table. "I'm on my way," mam says when she hears my voice. By the time she arrives I'm on the floor. I can't pull it together. The kids are trying to comfort me, but I'm panicking. "Why won't they help you?" my mam asks when she sees me. "They can't just leave you like this! Do they really let mothers crack up for the sake of a baby that won't live?"
Yes they do. They are.
15 September, 2015
I watch a debate on the Eighth Amendment. I send the speakers a message, saying I'd wish I'd been able to speak. One of them messages me back. How am I, she asks. Am I getting help? Can she support me? Am I receiving counselling?
I realize I was reaching out for help when I sent that message. I'm desperately yearning for someone to understand.
17 September, 2015
I meet the midwife. She tells me I'll know when the baby's dead. She explains what the induction will be like. What pain relief is available to me. We talk about coffins. Baby clothes. The tables to stop my milk from flowing. Whether I want the baby buried or cremated. My little girl.
21 September, 2015
Carla feels the baby kicking for the first time. It's her first proper kick in weeks.
23 September, 2015
She's gone. Did she suffer? Was it quick or slow? Did the cysts on the placenta starve her of nutrients and oxygen? Was the build up of fluid around her too much pressure for her little heart? Did the genetic blip mean her development couldn't continue beyond that point?
25 September, 2015
Alex Patricia Cullen-Delsol was born on 25th September 2015. She was 1lb 10oz. She was beautiful, perfect, broken, and still. Completely still.
15 October, 2015
I'm struggling to adapt to normal life. I'm comfortable at home. Too comfortable. I start cooking and cleaning to make up for what a shitty mam I've been to the kids. I avoid people, daylight and exercise.
4 November, 2015
Today I tweeted the Irish Prime Minister, Enda Kenny. "1st period since my stillborn baby," I write. "I carried her for 6 weeks after her diagnosis, losing my mind with grief. #repealthe8th." I want to prevent other families suffering like us.
A journalist gets in touch with me and I share my story. We both cry. She writes an amazing story. I'm invited to meet with the Minister for Employment Affairs and Social Protection to share my story. Can I manage a trip to Dublin? I can try.
9 December, 2015
I sit in a room with the Minister and talk for 20 minutes solidly. She cries with me about Alex. I see the power of my story. I feel less hopeless, less insignificant. Someone is finally listening and agreeing that what I experienced was wrong. That I didn't deserve it. And neither does anyone else. And it needs to change.