Prior to May 2018 I knew very little about congenital heart conditions, and had never heard of the condition Transposition of the Great Arteries (TGA), a condition in which the two main blood vessels leaving the heart are switched over. Then all that changed as I sat and listened to a cardiologist tell my husband and I that our unborn daughter had TGA and would require open heart surgery within a few days of her birth. We were told that the surgery would happen in a children’s hospital in Dublin (over 100 miles from where we live) and in order to be as close as possible to that hospital I would also have to give birth in a hospital in Dublin.
We were given so much information in the months that followed, but were reassured that the likelihood of a successful surgery was high. However, despite the reassurance I was conscious of a little voice within me worrying that something might go wrong, that we might be the small percentage that didn’t get our happy ending.
On the 9th September 2018 my husband and I travelled to Dublin and my labour was induced. The labour was pretty straightforward and in the early afternoon of 10th September I gave birth to our daughter, Aoibh. A paediatric team were assembled and waiting in the delivery suite for her arrival. The team worked quickly, and we were then told Aoibh was going to be moved to the neonatal unit so that they could stabilise her. I was completely oblivious to the fact that things had already started to go wrong. There were issues related to how quickly the hole in Aoibh had heart closed and things were further complicated when one of Aoibh’s lungs collapsed which needed intervention prior to her transfer to the nearby children’s hospital.
Meanwhile, I was still in the delivery suite hoping that if I was well enough I could visit her that evening, which unfortunately did not come to be. The next morning, I again sat impatiently waiting to be discharged so that I could go to Aoibh. It’s hard not to resent that ‘wasted’ time. I thought we would have a lifetime together, that those hours apart wouldn’t matter in the grand scheme, but in reality they were crucial hours of her life that I missed.
On the afternoon of the 11th September I walked into the paediatric ICU and realised I didn’t even know which baby was mine, feeling I was failing at motherhood before I’d even really begun. The next 24 hours were a blur of waiting for various doctors to talk to us, every message the same, things weren’t looking good. We were lucky to have the support of my parents there and in the quiet of the night we got Aoibh christened.
I remain in awe of the staff within that unit. I will never forget their gentleness. The gentleness in which they told us they had exhausted all interventions, that it wouldn’t be fair on Aoibh to try and resuscitate if her heart stopped, and the gentleness in which they told us it was time to turn off her ventilator. Our first child, our beautiful daughter lived her whole life in two short days, and I honestly wasn’t sure if I could go on living without her.
The rest is a blur. In Ireland funerals happen quickly. We brought Aoibh to my parents’ home to be surrounded by family and friends, and then 2 days later we said goodbye. I’m not sure I will ever be able to adequately describe the pain of getting condolences cards instead of new baby cards.
I remember in the weeks that followed frantically searching the internet. I needed to find stories from people who knew what this felt like, who had walked this journey, and could reassure me that life goes on.
I am now 4 years on (4 years exactly as I write this) and I can say that life does push on. A doctor told me that in time life will grow around this pain, and those words have stayed with me. Life does march on regardless of how much I want it to stop just for moment every so often. It took me a long time to see joy in life again, and to feel happiness without guilt.
Now I spend my time running after Aoibh’s little brother. Pregnancy after loss is a bit of a minefield. It is joy, pain, anxiety, relief, love, and fear. In some ways I think losing my first child meant I didn’t fully understand the magnitude of the loss at the time. Now when I look at Aoibh’s little brother and watch with joy as he develops, I also feel the pain of never getting to know the person Aoibh should have become.
I often wonder what I would tell that 2018 version of me. I think I would want her to know that she is stronger than she thinks she is, that the journey will be tough, but she will be tougher because of it. I would also tell her not to rush it, don’t rush to show people you’re ok, don’t rush the return of ‘normal’ and give yourself time to heal.
I still don’t have all the answers, I’m slowly learning that this grief is lifelong and I’m still working on accepting that. I struggle with the ‘how many children do you have/ is he your first?’ question. My only advice to others is that there is no wrong answer. Just answer in whatever way feels right at the time. Sometimes I’m not strong enough to tell Aoibh’s story, and that’s ok.
Aoibh is never far from my mind, sometimes she is every thought I have that day, sometimes just floating in the distance, but ever present. I can’t help but wonder who she would have been, who I would be if she were here and I worry about how the loss of a sister he never knew will impact my son in the future.
All I know for sure is that Aoibh showed me a strength I never knew was within me. In return I can only speak her name, tell her story, try and support others who are also walking this path, and hope that she is somewhere looking down guiding my path.
A moment in our arms, a lifetime in our hearts