My beautiful Aoibh
On Monday your Dad and I made the journey to Dublin to meet the team that looked after you. As with everything my mind was completely spilt between wanting to find the answers to my questions and being terrified that I would not be strong enough to listen to those answers. I have no doubt that you heard me plead with you a hundred times to be by my side during that meeting. I knew before attending the meeting that nothing that would be said would make this any better, but I was so scared that something would be said that would make this all worse, that they would tell us that a mistake was made or that if some small thing had been done differently then you would still be with us.
I truely believe that your short life touched every person who sat in that meeting, I could feel it as soon as I sat down and I knew without a shadow of a doubt that they fought hard for you and that they, as much as anyone, had desperately wanted a different outcome for you.
My one aim going into that meeting was to leave it knowing your story fully and thankfully I can now say that I know that. I now know that you struggled as soon as your cord was cut and that the hole in your heart shut almost immediately resulting in a lack of oxygen going to your brain. I now understand that this is extremely rare and could not have been anticipated. I also now know that there were difficulties with your lungs and because those issues had to be fixed this delayed your transfer to the children’s hospital. I think everyone in that meeting wondered if things would have been different if the cardiologists and their equipment had been a corridor away, rather than an ambulance trip away.
I always knew in my heart that you fought as hard as you could for as long as you could and this was confirmed when I was told that for a short time you rallied, the function of many of your organs started to improve, but ultimately the damage done to your brain in those first few minutes of life meant that your brain became too tired to continue on and so sent a message to the rest of your organs to also start to shut down.
I have to be honest and say that it was like a dagger to my heart when I was told that since Belfast started transferring babies like you to Dublin for treatment 3 years ago, you are the only baby who has died.
It would be easy to spiral into the painful world of asking the unanswerable questions as to why it had to be you, why it had to be us, why we have been given such a heavy burden to carry. However, when I first started writing to you I promised I would do all I could to find any specks of light and push towards positivity. As I sit and write this now it is hard to feel anything other than pain, but I know I will use this pain to push for a potential different outcome for another family. Whether that be raising money for the children’s hospital, raising awareness about your condition or even telling your story to highlight the need to push forward with the planned new hospital that will merge all the services and ensure that in the future the cardiologists and their equipment are only a corridor away.
I don’t know why I was given this path to walk, but I do know that if going back and changing our story meant that I never met you at all, I would choose to live those 2 heartbreaking days with you a thousand times over.
I have no doubt that there are more challenges to come my way, and maybe even harder days, but I am glad to be able to say that, with you by my side, your father and I were able to sit with those who cared and fought for you and together we were finally able to complete your story.
Forever yours
Mum xx
Dear Aoibh 