Living with Loss : Grieving for one twin, whilst raising the other.

This blog comes with a trigger warning of baby loss. The ever inspiring Aideen McCanny @ivfmumblings has written a beautiful blog on the reality that both her and her husband, Andrew, are living with each day. I talk a lot about NICU and how amazing the babies are at fighting to go home with their parents, but the reality of it is, there are so many parents that never get to take their baby home. And those families should be spoken of, remembered and thought of too. I am so grateful to Aideen for being so open, honest and willing to share her own experience of baby loss in NICU.

Heartbroken yet happy might sound like a contradiction but it’s the best way to describe how I feel right now. Like many, over the years, I’ve lost people close to me. An ex-boyfriend, grandparents, aunts, uncles and friends. I grieved in what society deems the appropriate way; privately and behind closed doors, responding with: “I’m okay” when anyone asked.

I thought I knew what grief was until I suffered the loss of my son at 7 weeks. The loss I experienced in my past didn’t prepare me for the sheer agonising pain that followed. My heart did and still does physically ache.

My loss is raw, with our little boy Eoin having passed just six months ago. I’ve been told that it gets easier over time, which is something that I find hard to believe right now. While it’s uncertain how my grief will continue to unfold, what I do know is that however you choose to grieve the loss of a child is your prerogative. There is absolutely no right or wrong way to do this.

“I thought I knew what grief was until I suffered the loss of my son at 7 weeks”

Aideen McCanny @ivfmumblings

For me, my situation is little more complex. You see, Eoin was a twin. We never got to bring him home from hospital, but his twin sister Lucia is here with us now. She has just turned 8 months (almost 6 months corrected).

The past 5 years have been filled with heartache, endless tests and IVF cycles as we struggled to achieve what comes so easily to others. Finally, our seventh IVF transfer was a success and just a few weeks after seeing those long-awaited for lines on a pregnancy test, I found out we were expecting twins. I thought once I got pregnant, things would be easier. I was ecstatic when we found out we were having twins. A ready-made family meant no more cycles of IVF. However, at my 12-week scan, I was confronted with a shocking statistic. My consultant informed me that 15% of twins are born before 32 weeks. I knew twin pregnancies were risky but I didn’t really think it would apply to me. After everything we had been through, I was sure this pregnancy would be a breeze.

However, at 28 weeks, things started to unravel. I was diagnosed with cholestasis, a condition which affects around 1 in 140 pregnant women and is caused when bile acids do not flow properly from the liver and build up in the body instead. I attended the hospital regularly for monitoring appointments and during one of these, my kidney function was flagged up. On Sunday 19th July, I was due to attend the hospital for another monitoring appointment, but as I was getting ready, my waters broke. The consultant attempted to put a stop to labour but just a few hours later, Eoin’s cord prolapsed and so, an emergency C-section under general anaesthetic was carried out. The babies arrived at just 30 weeks. What followed was weeks spent in the NICU of two hospitals.

Initially, things were going well. Both babies were making progress and we were counting down the days until we got to bring them home. However, Eoin contracted NEC, a severe infection in the bowel, which sadly is common in premature babies. He seemingly started to get better before we were told he needed emergency surgery. A week later, he was back in theatre again but this time we were met with the words: “There is nothing we can do”. In that second, I couldn’t breathe. I couldn’t understand how our little boy, so full of life and fight could be taken from us.

Just a couple of days later, Eoin took his last breath. And a few days after that, we brought his sister Lucia home.”I couldn’t understand how our little boy, so full of life and fight could be taken from us.”

Losing a twin is devastating. It’s a strange kind of grief and unlike anything I’ve ever experienced before. “How are you?” is a question I’m asked daily and there’s no straightforward way to answer it. The truth is, I don’t really know how I am. It’s a conflicting thing to feel heartbroken and happy all at once; my heart aches for Eoin, yet I’m overjoyed every time I look at Lucia.

To make things a little more complicated, as a write this, I am currently almost 15 weeks pregnant with our rainbow baby. After everything we have been though, an unexpected, natural pregnancy was definitely a shock. We are delighted that Lucia will have a sibling close in age. I struggle daily when I think about how we will tell her about all of this in the future. Hopefully having a brother or sister just 14 months younger than her will make her own loss a little less lonely.

“It’s a conflicting thing to feel heartbroken and happy all at once; my heart aches for Eoin, yet I’m overjoyed every time I look at Lucia. “

Aideen McCanny @ivfmumblings

I won’t lie; pregnancy after loss is hard. I worry daily that we’ll face pre-term labour again, only this time, knowing what could go wrong makes it even harder. The thought of leaving Lucia on her own every day is too much to bear. But all we can do this time is hope – hope that a singleton pregnancy will be kinder on my body and that the little life growing inside me will continue to do just that until my due date, which just so happens to be my birthday.

I don’t think NICU ever truly leaves you. I can’t stand the beeping of our microwave because it transports me back to sitting underneath monitors. I can’t stand confined spaces because it makes me think of being squashed behind screens as I expressed around the clock. Eight months on, I still haven’t processed a lot of what has happened. I expect it will take a lifetime to do so. But for me, for now, I am doing as well as can be expected. 

Our story is one of loss, but I also want it to be one of hope.

Eoin & Lucia
Aideen, Eoin & Lucia
Andrew, Aideen, Eoin & Lucia
Andrew, Aideen & Lucia

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