In May 2018 when I was 25 weeks pregnant my husband and I sat in a cardiologist’s office and listened while we were told that our daughter had a serious heart defect, Transposition of the Great Arteries.

Essentially this meant that the two main arteries in her heart were the wrong way round and she would require open heart surgery a few days after her birth. We were given reassurance about the procedure and we discussed a plan. I would be induced at 39 weeks and following delivery our baby would be transferred to the nearby children’s hospital for treatment.

Aoibh arrived into the world at 3.35pm on 10th September 2018. I knew before her birth that a lot of doctors and nurses would be waiting for her arrival and that I would not be allowed to hold her. I watched anxiously as the team gathered around her, working quickly to give her extra oxygen and the medication required to keep the hole in her heart open to allow oxygen rich blood to reach the rest of her body.

We were briefly allowed to give her a cuddle before she was taken away for more treatment.

The next few days were a blur to me. We were told that Aoibh was much sicker than anticipated but that the staff in ICU were doing all they could for her. I prayed hard during those two days that someone would tell us that she had turned a corner, that improvements could be seen but those words never came.

I will never forget the first moment I saw her in ICU, so small with so many tubes and machines keeping her alive. I didn’t know what to do, how to let her know I was there. The nurses were great and encouraged me to hold her hand and talk to her. I kissed her chest and for a brief moment she opened her eyes, that moment took my breath away.

I didn’t want to leave her that evening but I was told that Aoibh was stable and was reassured that we would be phoned if there was any need for us to come back to the ward. Thankfully we were staying in the hospital’s family accommodation and only a few minutes walk away from the ward.

I remember feeling a little hopeful as I went to bed that night, Aoibh was stable, she was a fighter, she could get through this. A few hours later my husband’s phone rang and I knew instantly what that phone call meant. The nurse asked us to come to the ward as quickly as we could.

The doctor was wonderful, as gently as he could he told us that Aoibh’s body was struggling, that they had done as much as could for her and the likelihood of her passing away that night was high.

We quickly arranged for her to be christened, and my parents arrived to be with us. I spent the next few hours looking at the screens watching those vital numbers slowly go down. For a few hours the numbers stabilised and we were encouraged to go and get some sleep. As before, a few hours into sleep we got the call to return to the ward.

 

On the morning of the 12th September doctors gathered to tell us that Aoibh was not going to make it through the day. I could see the pain in the consultant’s eyes and knew with certainty that the medical team had fought as hard as they possibly could for our baby. We phoned family and then spent the next few hours cuddling Aoibh, hoping that she knew how much we loved her.

Pretty much exactly 48 hours after she was born, I held my beautiful daughter as she quietly slipped away from us. In doing so she took a piece of me with her. The hospital staff were amazing, they gently guided us through everything, I will never forget their kindness and compassion.

So many thoughts ran through my head in the coming days and weeks, how could I get through this, how could I ever return to any sense of normality, return to any of places that I had last been when I was blissfully unaware of the earth shattering pain that was just around the corner. I also found myself thinking about maybe having another baby again and with that thought came so much guilt that I could even consider such a thing.

In the weeks after Aoibh’s death I can remember searching the internet hoping to find something somewhere that would tell me I wasn’t alone. Then I found Sands. To be honest I had never heard of the charity before, maybe I had unconsciously blocked information about the charity from my mind as I naively thought I would never need their service. I am so thankful for their support. Their website told me that I wasn’t alone, that others were out there going through the same heartbreaking pain. My husband and I attend a support group regularly and I think it is so special to have a chance to spend time talking about our babies, sharing stories and offering support to one another.

I am still only a few steps down this path that I never wanted to take, but already I know some things for certain. I know that my husband and I will never be the same, that Aoibh will always be our missing piece. But I also know that the sun does shine again and it’s ok to smile on those days. Most importantly I want others to know that nothing makes my heart sing more than someone saying Aoibh’s name and asking about her. Her story is short, but it is a precious story to me and one that I would tell every day if I could.