Good morning. I'm Claire Cullen-Delsol @DelsolClaire I'm 33, married to Wayne and have two kids, Carla 10 & Nathan 4. I'm a member of @TFMRIRE and have campaigned for #repealthe8th since 2015. Here's me on the right.
A bit of background on me, I was born in Dublin, raised in Carrick on Suir, moved to Cork for College, met Wayne, had Carla, moved to Waterford, got degree, got married, had Nathan. I work full-time for a not-for-profit, and my hobbies include food & jigsaw puzzles.
In 2015 I found out I was pregnant with our 3rd baby. Nathan was only 1, Carla was 7. I was working a job with a 100km commute & long hours & pregnancy was not in the plan. But as my dad says, "we plan, God laughs". It didn't take long to get excited about another baba.
The pregnancy was fraught. I was inexplicably anxious. I cried frequently for no reason. I waited as long as possible to tell people but at 10/11 weeks I already had a noticeable bump. At 11 weeks I went to the toilet in work & saw blood. I panicked. #Together4Yes #repealthe8th
An emergency scan reassured us and we 'went public' with news of Number 3 (nicknamed Peapod). As you can see she looked more like a peanut at 12weeks but that was Carla's nickname.
My bump continued to grow really quickly and I thought that was a good sign. I attended the local Waterford hospital where anomaly scans are standard, luckily. Mine was on the 13th August 2015. It was a beautiful sunny day. I tore home from work to pick up Wayne, mam & the kids.
At ten hospital the midwife brought me in on my own first to check the measurements before bringing in the rest of the family to say hi to the baby. She was scanning me for ages and I eventually asked if everything was alright. Her answer was the worst thing you can hear. "No."
She started to gently & calmly point out huge cysts on the placenta, missing bones in baby's face, issues with brain development, then the baby's hands, leg positions & eventually said she needed to move me to another room with a better machine. I asked her to get my husband.
We told the kids the machine wasn't working & asked mam to bring them to the cafe while we waited for another scan. Wayne gripped my hand as we sat in silence. There were two more people waiting in the next room with the midwife. This scan was more technical. #repealthe8th
"Bilateral cleft. Overlapping digits. Underdeveloped cerebellum. Placental cysts. No stomach observed. Kidney issues? Spots on heart". I listened in terror with tears running down my face. It finished eventually. We had a referral to Holles St. to foetal medicine specialist.
I tried to pull myself together to face the kids. My mam's face when we walked into the lobby was almost enough to break me. We lied about the machine being broken. 'Sorry guys, maybe next time. Oh you got chocolate? Looks lovely!" Walking back out into the sunshine, shivering.
I went straight to Google Scholar & put in those technical terms the kind & lovely midwife told me not to Google. "Chromosomal disorder. Rarely results in live births. High mortality in first month. Few infants survive first year. Incompatible with life. Fatal." #together4yes
I wrote in my diary." I want to curl into a ball and be swallowed by the earth. I don't know how to deal with this. My little person may not make it. I don't know how to cope or live with this. I want to keep this baby safe forever. I want Christmases full of children...
I want a birthday party to celebrate in December & a house full of life & laughter. Not with a shadow always of who should be here. Who should have been".
The next day I called in sick & rang my GP for an emergency app. I met a young, female doctor I'd so never seen before. Little did I know how important her help would prove to be in the coming months. She was lovely, kind, reassuring. I left feeling stronger. #Together4Yes
Wayne's a great man for "getting out". His response to tough days or situations is "let's get out." So we went (I'm mortified to say) to Penneys for socks & underwear for the kids... it was great to act normal for a while. Then I went to the baby section. Why? I don't know.
Standing there looking at the little socks, vests, baby grows I felt the tears rolling down my face. I couldn't move. I felt a hand on my shoulder, Wayne's arms around me, gently guiding me, sobbing the whole way back to the car. #StopPunishingTragedy #repealthe8th #Together4Yes
We got a phone call later that day from Holles St. Offering us an appointment for the 18th. The days in between were a blur of tears, anger, no sleep and no showers. I don't know how but Wayne stayed calm, functional & poised. Taking care of me, the kids, the house.
My mam stepped in taking the kids when she could, my poor dad didn't know what to say and eventually rang to say "I'm here for you. Whatever happens, whatever you need." My brother arrived up to cook massive meals and feed me! Wayne felt the baby kicking for the 1st time...
The appointment in Holles St. Finally came. The consultant was very forthright & matter of fact. He agreed with some of the first midwives findings, the heart, the stomach, the cysts, the extent of the cleft lip (absent bones in face). I had an amniocentesis. We went home to wait
The consultant was reserving judgement on the possibility of chromosome disorder. He said he wouldn't be surprised either way. The midwife attending was a lot less optimistic. I remember her saying 'but the heart. But the hand. But the face'. I just wanted to cling to hope
We expected the results on Friday 21st Aug. Waited by the phone for the day. Started ringing the hospital by the afternoon. They hadn't arrived. We wouldn't get our results till Monday. Exhausted from not sleeping at that stage facing that weekend was awful.
The next few diary entries are pretty angry. Lots of expletives & lashing out. Suffice to say I didn't appreciate being told to "stay positive", people trying to rub my bump, or looking for 'signs'. "Is she kicking? That's a good sign! Are you still sick? That's a good sign!"
We got the results on the 24th August. I'd decided to paint the kitchen. I mixed the paint myself to get the perfect shade of blue. Always a mistake, you run out & can never get it right again so you have weird patches. The lab's fax machine was broken. They'd phone instead.
3pm, 3.20pm, 3.45.... 4.20pm "I'm sorry Claire, the baby has Patau's. It's a complete trisomy. It's not compatible with life. Alex won't survive." I wrote "my whole life fell down around me. I grabbed Wayne's hand as he collapsed onto the counter...my heart stop, stomach dropped
Cold dread pours down my back. We sit in stunned silence after a I've cried all I can. The midwife calls back with an appointment for the next day. I can't bear to tell my mam so Wayne calls her, insists it's not fair to make her wait. I hear her heartbroken gasp. I'm crushed"
It hit me again. I can't describe the noise I made. The pain & grief felt like a lead weight. It felt physical. I had no control. I howled like an animal. I could hear myself, screaming "no". Clutching at Wayne's shirt, begging for something. For it not to be real.
I desperately needed to see my kids but I knew I'd frighten them. The howling pain eventually passed to stillness. Then to action. The kids were coming home. We tidied the kitchen & hung out the washing. Put away the paint & waited in our half finished kitchen to see our kids.
When the kids came home we put on our game faces. Dinner, baths, jammies, cartoons, books. Wayne was followed to the bathroom by Nathan who threw his dummy&bottle into the loo while Wayne was peeing. Somehow we all laughed.
We drove to Dublin again the next day. Ate breakfast rolls & made conversation. A few times Wayne pointed out cars with room for 3 car seats. We'd been looking for one. Eventually I have to say "We don't need one now". I can't look at him as I say it. We held hands instead.
"Your baby is unlike to be born alive. You should expect a late miscarriage or stillbirth. You won't be induced. Any action to bring on labour would be considered a termination and illegal." I have to ask before its discussed "what about a termination abroad?" I had to ask.
The hospital is aware of a high standard of care in Liverpool Women's, they can't refer me there, but will pass on information if they request it. No irish medical professional can help me book or arrange to go there. I was 22 weeks pregnant. #repealthe8th #Together4Yes
I would have 18 weeks more of pregnancy. Work, school runs, all the attention pregnant women get, "when are you due? Boy or girl? How are you feeling?"waiting to lose my child & looking like I'm expecting one? #StopPunishingTragedy #repealthe8th #Together4Yes
I'm gonna take a little break now. I have to go in and do a presentation in work & I'm feeling a bit wiped out. I'll be back online later on. In the meantime please have a look at the TFMR Facebook page and @TFMRIRE to find out how to support families like mine. #Together4Yes
Shout out to the lady at the presentation wearing a load of Repeal Merch! Felt like a warm hug after this morning. The power of those visible signs of support whether it's @repealproject @Repealist_ @freesafelegal is so tangible. Just what I needed.
Back to the 25th August 2015. I had a huge decision to make. I wrote down my thought process at the time. I knew my options were to stay here in Ireland, wait for a stillbirth & endure up to 18 more weeks of pregnancy with no baby at the end of it. Or travel to Liverpool.
"Travel for a termination". It sounds so simple. But how could I leave home for days? Leave my 2 kids at home, deliver a dead baby, say goodbye & get back on a plane to wait for her ashes in the post? #StopPunishingTragedy #together4yes
I didn't want to "terminate" I wanted to deliver her. I wanted to hold her & say goodbye in my own time, not rush for a flight. I wanted my kids, parents & brother to meet her & hold her. I wanted my own bed & shower & friends. I wanted a funeral, not a DHL delivery.
Her life meant more than that. But so did mine. How could her rights & mine be equal? She never had a chance of 'life'. Every cell in her body had a tiny, catastrophic flaw & she never would or could have lived outside my body. #StopPunishingTragedy #repealthe8th
I was a grown woman, with children, husband, friends, a job. How was all of that equal to a hopeless heartbeat in a dying body? How could I be responsible for 2 other kids, with the potential for anything, but not to make a decision for my other child who would certainly die?
Why were all my other responsibilities & choices, apparently so important to the world before, not now as important as maintaining a heartbeat that will never be anything more? There was literally nothing I could ever do for her. But I couldn't do anything for myself either.
I had to tell my daughter her baby sister would die. The hardest moment of my life up to that point. Her little face crumbling up, her high voice asking was there any hope? She tried to find a way to believe, hope and wish that Alex would be ok. I couldn't let her hold false hope
I had to look my little girl in the eyes and say No. The baby is going to die. And there's nothing we can do to help her. Hopes & wishes won't help. And cruel as that was, it was the kindest option I had available. #StopPunishingTragedy #repealthe8th #together4yes
We held her, cried with her, reassured her as much as we could. Told her we all loved each other and would take care of each other. She sobbed her heart out & begged it not to be true. I'd have done anything not to put her through that. #together4yes #StopPunishingTragedy
I had an appointment with a consultant in Waterford. By the time it came around I was sure I'd be travelling to Liverpool. I walked into the hospital in Waterford & sat in a waiting room full of pregnant women. I was planning to leave again when they called my name.
I walked through the doors into the corridor, the amazing midwife looled in my eyes, put her hand on ny arm & said "Im so sorry. This must be so hard for you. Being back here again" And I collapsed, couldn't breathe through the tears, Wayne holdinh me up, midwives running to me.
They got me onto a chair, checked my pulse, my blood pressure, holding my hand, stroking my hair. "I'm so sorry" over & over. A private room. A box of tissues, glass of water. Hugs, tears, reassurance. "You will get through this". The consultant brought me in.
He told me my baby would die, there was no good medical reason to keep me pregnant but no other option. He was sorry. He did another scan. Asked what we'd named her. Printed us this picture, enough copies for the family to each have one. #together4yes
Going into town to buy schoolbooks & uniforms ended in another public breakdown. This time in front of Carla, in her favourite cafe. Then a trip to buy her birthday present, someone asked when I was due. Then a trip to the butchers when I saw a sign "17 weeks to Christmas"
Carla's birthday, no party, no friends, no big celebration. Just us, my parents & brother. It hit me, I'd never get to sign Alex's name on a card, she'd never have a birthday, this time next year she'd be gone. My heart couldn't take it. I knew I'd never cope with travelling.
I knew I'd never cope with travelling. I couldn't do the school run. Couldn't face the supermarket. Barely made it to my parents house. Even if we had the money I couldn't handle airports, buses, hospital. The thought of it made me shake with fear. I'd have to wait.
I started having nightmares about labour & birth. I'd wake up crying, with a headache. I stopped having the few seconds reprieve in the morning when I woke up, instead I'd feel the pain before I opened my eyes. #repealthe8th #together4yes
On the 10th September I lay awake all night, having had no kicks or movement since that morning. I drank cold drinks, hot drinks, lay on one side & another. Nothing. At about 6am I felt a poke, then a wiggle. I cried with relief, disappointment, fear, exhaustion.
More nights up late googling. "Induction after death of baby" "preparing for a stillbirth" "labour with a dead baby" "Patau Syndrome". What would my baby would look like? Would I be able to hold her? Kiss her? How many more nights ahead of me wondering if she was dead?
Sept 12th. Wayne at work, I was home, crying into my hands at the kitchen table. Mam rang, heard my voice. Said "don't do anything, I'm on the way". By the time she arrived I was on the floor. Couldn't pull it together. Panic, pain, grief. The kids trying to comfort me.
Her pain, she was looking at her baby. "Why won't they help you? They can't 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.
#repealthe8th #StopPunishingTragedy #together4yes
15th September Watched a #vinb debate on the 8th Amendment. @ClareDalyTD & @Doctors4Choice versus 2 women I'd never heard of before. (I'm all too familiar now) @TFMRIRE were invited but then bumped....for 'gender balance". I sent them a message saying I wish they'd been on.
I got one back from @rlbowie asking how I was. Offering support. Was I getting help? Was there counselling? I didn't realise I was reaching out for help when I sent that message but I was. Desperately yearning for someone to understand. #StopPunishingTragedy
17th September. I met the midwife. She told me how I'd know when the baby was dead. What an induction would be like. What pain relief was available. The memory box. The coffin. The clothes. The tablets to stop my milk coming in. Burial or cremation. My little girl.
21st September. GP asked me to come in before she went on holidays. Arranged for cover to mind me while she was away. Told me she'd see me when she came back.
Carla felt the baby kicking for the first time. Alex's first proper kick in weeks.
She was gone. Did she suffer? Was it quick or slow? Did the cysts on the placenta starve her of nutrients & oxygen? The the build up of fluid around her put too much pressure on her little heart? Did the genetic blip mean her development couldn't continue beyond that point?
I've spoken about the delivery before. I can't do it again right now. Have a look at my tweets from 23-25th Sept 2017. Alex Patricia Cullen-Delsol was born on 25th September 2015. She was 1lb 10oz. She was beautiful, perfect, broken and still. Completely still.
I struggled to adapt to normal life again after I had Alex. I was comfortable at home. Too comfortable. Cooking & cleaning & making up to my kids for the shitty mam I'd been. My main social outlet was Viber & Twitter. I avoided people, daylight, exercise.
About 6 weeks after Alex birth @GrainneMaguire started tweeting then Taoiseach, Enda Kenny about her period. I'd written to Enda during my pregnancy to beg for help & understanding. His reply was waiting when we got home from Alex's funeral. I decided to join in the period tweets
Here it is
It got a huge reaction. It was even reproduced in publications around the world. I knew I wanted to help #repealthe8th I wanted to prevent other families suffering like us & now I had a way to tell people about it, without leaving the house!
Following some other amateurish and clumsy tweets a journalist got in touch looking for a quote for her piece. She was only a young one at a paper I'd never even heard of. She rang me, I talked for an hour. We both cried. She wrote an amazing article. #Together4Yes #repealthe8th
You might know her now? @ellenmcoyne from @thetimesIE
She turned 25 the day this was published. She's gone on to do some of the best work this country has seen from a journalist. She's fearless, smart, articulate & clearly works nonstop.
thetimes.co.uk/article/i-had-…
I shared it on my Facebook profile & that was how I let my extended circle know what I'd been through. I wasn't going to hide anymore. After that @rlbowie asked me to go with @TFMRIRE to meet @ReginaD Could I manage a trip to Dublin? I had to try.
It was a turning point. I walked through Leinster House for the first time since my 4th year school tour, sat in a room with a TD and talked for about 20 minutes solid. Regina Doherty joined a (now long) list of people who cried with me about Alex. I saw the power of my story.
I felt less hopeless, less insignificant, less valueless and started to feel my worth, my humanity grow. Someone finally was listening and agreeing that what I'd experienced was wrong. That I didn't deserve it. And neither does anyone else. And it needs to change.
After that I became a @TFMRIRE member, went to meetings & support groups with @LeanbhMoChroi met some of the most amazing people, friends, and supporters anyone could ask for. I realised I wasn't alone. I don't know where I'd be now only for them. My gratitude forever to them.
So over the last 2.5 yrs I've spoken to countless journalists from @guardian @AlJazeera @thetimesIE @broadly @Independent_ie @euronews @BBC and probably lots more I can't remember. I joined meetings with @SimonHarrisTD @BillyKelleherTD and @ReginaDo to tell them our stories.
I went to @repealeight meetings & listened to speakers from @RosaWomen @AmnestyIreland @dublinwellwoman @IrishFPA @freesafelegal and realised how much I had to learn about the reality of abortion, of pregnancy and of the 8th Amendment. Those women taught me so much.
And I talk the head off anyone who'll listen now about why the 8th has to go & what it did to me, my family, my kids and my friends. #repealthe8th #Together4Yes #StopPunishingTragedy
My proudest moment was addressing the #8Committee in the Dail last year with Gerry Edwards, former chair of TFMR. It was terrifying. We waited all day until 7.30pm to go in. I was so anxious I thought I would puke. I went in expecting hostility or resistance. From some at least.
What happened was better than I could ever have hoped. They listened, they cried, they asked really good questions. They were beyond respectful. They were horrified on my behalf & on behalf of all the families. Here's a terrible picture of me from the day.
And better yet they took what we said and they used it. They used it in debates & conversation. They referenced my testimony as reasons for their decisions. They put it in their report. I made a difference. A real difference. I felt like I was honouring Alex that day.
I'm exhausted from today guys. It's been so hard. Reliving the pregnancy is painful & raw. I can't share pictures of my little Alex, I'm worried her physical anomolies will make her a target, she might be used or misrepresented by nasty people. But I share as much of her as I can
The more people we can reach in @TFMRIRE the better our chances of winning this referendum. We have a chance now to prevent this happening in the future. To our daughters, sisters, friends. If you can help please do. Every bit counts. tfmr.causevox.com
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