This letter says it all! Thank you 🙏 

Dear TinyLife

My name is Fionn and I was born at 29 weeks and 5 days on the 25^th of October 2017 by emergency caesarean in the RVMH Belfast.  

My mummy had pre-eclampsia.  I was diagnosed prenatally with a congenital heart defect - Tricuspid Artesia and when I was born they discovered I have a sternal cleft. I only weighed 1.036kg. Time was not on my side. I was too small for surgery and my heart started to fail. As I lay in my incubator surrounded by tubes, leads, machines and beeps doing my best to stay alive. I had met my mummy and daddy but not my brothers. I had to meet them!! Thank you TinyLife for giving my mummy a hospital grade double breast pump, she had to pump every three hours so I could get the nourishment from her milk. I needed to grow. 

In the early days I was oblivious to all the fuss I was causing but you, TinyLife were there for my family. You gave simple practical advice, you understood what my mummy and daddy were going through. A friendly face in the family room when they couldn’t be by my side. You understood. You help them so they could help me. My first month was fraught, we all took it day by day. On the 25^th November 2017, things got really bad my heart and lungs were giving up. I got christened and confirmed on that day. I got to meet my brothers – Eoghan and Cormac. They got to hold my hand. They drew the curtains around my incubator in NICU. Everyone was crying but my brothers weren’t …they told me they could not wait for me to get out of there and play with them. I had to keep going. You, TinyLife, help them too – in a time where their lives were utter chaos a friendly hello on a long, grey, daunting corridor where they sat reading waiting for mummy or daddy to come out from my side. 

You gave me my first Teddy and Octopus on World Prematurity day 16^th November 2019. And lovely purple crochet blanket for over my incubator. This made my mummy cry … with happiness it was my first present. Everyone was too scared to get me anything, just in case…… But you, TinyLife, knew, you understood. We preemies are fighters!!!

I had lots more battles to face before I left NICU.  On the 10^th December 2017, I was transfer to NICU The Coombe in Dublin. My first of many ambulance trips in the “transporter shuttle”. My brothers got to wave me off. My heart was failing and I needed surgery but I was still too small and fragile. My surgery was scheduled in Crumlin for after Christmas but I got NEC (necrotising enterocolitis) on Christmas eve. My life was on the line again. On the 15^th of January I got my first catherisation to investigate the pressure in the different chambers in my heart. I got transferred back up to HDU in Belfast on the 20^th January 2018. Again your friendly presence, TinyLife, was there, you knew all about my trip to Dublin. You were there for my family giving them a hidden strength so they could be there for me. I ended up back in Dublin for an emergency surgery to put a stent in to my PDA on Saturday 10^th February but came back to Belfast on the 13^th and got to go home for a while on the 21^st February. I had spent 117 days in NICU/HDU and PICU. Now I got to go home and see my brothers every day☺.

My heart was still failing and I needed another surgery but I need to be 2.5kg minimum to get on the heart bypass machine. I needed to grow, I was being tube fed every three hours. You provided a safe space to meet others who had been on the same Neonatal journey. I met boys and girls who were my incubator neighbours. Thanks to you TinyLife, my mummy and I did baby massage classes. I wasn’t very much into it but mummy loved the chat, the cup of tea and  cakes at the end. I never realised how scared my parents were to bring me out but here they felt they could have fun with me in a safe, non-judgemental way. The sign on my pram warning people to keep their germs away from me and the hand sanitisers were understood here!!!! I grew stronger and stronger and got my surgery on the 24^th of May 2018.  After another 17 days in PICU in Crumlin and in the Clarke Clinic in Belfast. I got to go home again. Thank you to all the amazing medical staff in Belfast and Dublin. 

I have taken part in research studies you, TinyLife fund in association with Queens University, without this type of research babies like me would not get the best start in life.  I love going to your Headquarters, TinyLife, for fun parties like at Halloween and Christmas. I love the sensory playroom.  I get to see my friends again and so does my mummy. My heart can’t be “fixed”, I have a pig skin to keep my chest together and I need more surgery, but I live to tell another tale!

Thank you TinyLife, you provided a lifeline when my family needed it most.  

Thank you TinyLife, you give my family emotional and practical support when we need it.  

Thank you TinyLife, you are my Safe Haven. 

Love Fionn