Thomas Edward Garner
27.10.17 – 29.04.18
Thomas was born on 27th October 2017 at St Mary’s hospital in Manchester and he started as he meant to go on – with a dramatic entrance into the world!
Very early on, Thomas showed that he had the strength and determination that he continued to show throughout his life, when at just 2 days old, he was going to be given a try off the ventilator. Thomas however had other ideas, and took the matter into his own hands and extubated himself, setting the pace for his nurses in st Mary’s.
After a few days, it became obvious that Thomas would need his heart surgery much earlier than we had all hoped and anticipated. He was transferred to Alder Hey hospital at 9 days old and this is where he would then spend the rest of his life.
Upon arriving at Alder Hey, we met an amazing team of medics who all seemed to know more about Thomas than we knew possible, and very quickly got him settled.
When he was just 13 days old, he was taken for his full repair open heart surgery. This is a day that we will never, ever forget. But the true fighter that he proved to be, Thomas came through it and went on to recover well, with minimal issues from the huge surgery he’d just been through.
It was at this point that he started getting a bit of a reputation for himself amongst the staff at Alder Hey. Thomas liked to be unpredictable. He didn’t like to do things in a ‘text book’ way. No matter how closely he was watched, he could just throw a curve ball at any moment. And he did this all the way through! From random arrhythmias after his heart surgery that he would self correct sometimes and other times not, to random episodes of rejecting ventilation, Thomas certainly kept his nurses and doctors on their toes.
Although Thomas spend his whole life in hospital, this didn’t stop us being able to enjoy our new baby. Every day I was able to wash him, do all his cares, touch him, play with him, talk to him and read to him. One of my highlights came on the 27th November, when just after swaddling him, I was talking to him and he was looking into my eyes and he just cracked a big gummy smile. I then spent the rest of the day trying to get him to repeat this which eventually I managed and got the photographic evidence.
There were many, many good times had with Thomas. He loved bright colours. He would focus on bright pages in a book, and loved watching baby sensory TV seeing the rainbows and bright coloured shapes fly by. He enjoyed playing with his toys, his octopus crocheted by his great auntie Laurie being an all time favourite. He would feel the different textures, grab hold of different parts and was comforted by pulling on the tentacles instead of his tubes and wires.
The day I got him out of bed for the first time will be one I will never forget. After many times of getting very close, when the perfect opportunity arose just after his first planned extubation, his lovely nurse Kerri got him straight out of bed and into my arms. The first time I’d ever held him, 6 weeks after he was born.
He did have to go back onto the ventilator unfortunately, so getting him out for cuddles after that was challenging and next came on the 26th December when his doctor, Sam, insisted on making my Christmas wish come true. Dan had to wait a little longer and on the 6th February, Thomas’ nurse Donna insisted that Dan had his first hold since birth.
Thomas also enjoyed some arts and crafts. He loved seeing play specialist Kerry come around every week, where sometimes she would paint his feet to make cards, or take prints of his feet to make jewellery. He even had a go at some pottery painting! He certainly did have a lot of opportunities whilst in Alder Hey. He also did some secret art work, particularly at Christmas, Valentine’s Day and Easter when we came in to him in the morning to find that he’d been making cards overnight with the help of his nurses.
Thomas was also able to enjoy spending some time with his big brother Henry at weekends. ‘Tom Tom’ as he was affectionally called by Henry, enjoyed kisses and strokes of the head from Henry, and Henry loved playing with his teddies and toys, some of his favourites being Mr Owl and his wind up music box.
Thomas has a reputation of doing things his own way, in his own time. This became known as ‘Thomas Time’. There was no setting time scales or expectations. In his 6 months and 2 days, Thomas had 3 major surgeries. Each one, he recovered well from. In his own time. This is where we saw his true strength. Up until the very end of his life, he fought with a strength that is impossible to explain. You see a small baby in a hospital bed, and you underestimate what they are capable of. Thomas was no exception. He had a lot of medical issues, of which new ones kept coming to light as his life went on. But through all of this, he continued to fight, to show strength and indescribable resilience. He enabled us to see the baby boy that he really was, underneath the world of medical issues that we lived in. And for me, seeing this amount of strength in a child so small and so vulnerable, is humbling. Thomas may no longer be with us, but the impact of his little life upon myself, our family, our friends and beyond is phenomenal. I entered Alder Hey as Thomas’ mother. I sat by his bedside as his advocate. And I will carry his strength, his determination, his commitment and his memory forward with me everyday. How can one so small, that lived for such a short time have such a profound impact on so many. This is Thomas. And this is who he was.
A 185 day hospital stay doesn’t come without its good and bad days. Every single day, good or bad, there was always a positive to be taken. Again, this is something that Thomas has shown me. No matter how bad the day, he would show us something to give us hope and to give us the strength to keep going. To keep advocating for him and to keep positivity that whatever happens, it will be the right thing to happen. The final day Thomas’ life still came with some positivity. The courageous fight he had put up. The memories that he’d enabled us to make with him. The family time that all 4 of us had had together. And the people that had enabled all of this to happen.
His devoted and dedicated team of medics. His nurses, his doctors, his consultants, his surgeons, his scrub nurses. The dietitians, the physiotherapists, the radiologists. The admin team, the psychology services, the claire house team. All these people. Dedicated to looking after Thomas and us as a family. Thankyou. You gave us 6 months. 185 days of Thomas time. For this, we will be forever grateful.
I’d like to give special mention to Thomas lead consultant, Ben, for looking after him for his whole hospital stay. To Petr, for being so kind and gentle with Thomas and for your commitment to him, as I’m sure you never had a single day off in 185 days! To Kent, for all you did for Thomas over the months, but particularly in the final hours of his life. The respect, dignity and compassion you showed for him, and for us. You gave us the ability to say goodbye in the most perfect way possible at the time.
I would love to thank each of Thomas’ care team individually for everything you did. But for now, I would just like you to know that you are an amazing, dedicated and committed team, and Dan and I thank each one of you for your involvement with Thomas. You all know who you are. And lastly, Claire House and in particular, Lesley, for caring for Thomas throughout his life, doing activities with him and for visiting me every week. The support you have been able to offer us as a family after Thomas passed away is truly incredible. We have been able to spend very precious time with him and make our last memories whilst being looked after as a family. Thankyou, from the bottom of our hearts.
Thomas leaves behind a large family. Myself and Dan. Devoted Mummy and Daddy. Big brother Henry. Grandparents Juliet, Martin, Sue and Steve. Great Grandparents Molly, Bob and Betty. Great Aunties Hazel, Jeni, Hilary, Helen, Karen and Jo. Great Uncles Jed, Pete, Kev, Andrew, Paul, Mark and Martin. Great cousins Joe, Heather, Matthew, Adam, Jessica, Liam, Nettie, Roisin, Craig, Josh, Chris, Olivia, Laurie, Boo, Tom, Arisha, Toby, Anna, Sam and Zach. Aunties Lucy, Alice, Grace and Joanna. Uncle Edward and cousins Charlie, Alfie, Arlo, Maggie and Bea. He is a very loved and very much missed baby boy and will forever be remembered by all these people and beyond.
For one so small, Thomas made a huge impact on so many. Although he didn’t meet all his family and friends, he made a tremendous impact on the lives of so many. Throughout his life, he received so much love, well wishes, gifts and letters from family, friends, nursery, even as far as families in Arizona. If love could have saved him, he would still be with us today.
His journey may be over, but his legacy will live on – in the hearts of us all, in our conversation, and our continuation of raising awareness in Thomas’ name.
You changed our world, in 185 days. Thomas, you are our hero. Goodnight baby boy.
Thomas Edward Garner, we love you.