Hypoplastic Left Heart Syndrome, or HLHS is a condition where a baby is born without the left side of their heart.
It doesn’t sound real does it? How can babies live with half a heart?
Well the answer is, before the 1980’s, they didn’t.
The first ‘Fontan’ operation was in 1968 and a set of pioneering, multi stage surgeries were developed in the 80s.
Emilio has now had all 3 open heart surgeries.
My Betta fish illustration was an original piece to be auctioned, as part of Heart Research UK’s annual HeART project.
This was right around the time Emilio had his 3rd open heart surgery. The one that finally separated the blue and red blood from mixing.
For the charity painting I had been thinking about 4 animals connected with strings, joining in the middle.
I hadn’t decided on what animals. Then I saw these beautiful blue and red fish, it made me think of the Fontan operation, separating the blue and red blood.
To me, it looked like my son’s heart.
Originally I wanted to draw 4 fish to represent myself, my husband, my daughter and my son.
One of the hardest things for our family about Emilio’s condition is that it often separates our family.
Emilio and I have spent long months in hospital.
Simon and Sofia only saw us on weekends.
Sofia and Emilio in hospital, Christmas 2017.
One 7 week visit ,when Sofia was 4, she was really struggling with missing me. The way kids do when they see you after you’ve been gone.
She had a massive tantrum outside PICU and nothing would calm her down.
I swapped with Simon so I could sit with her and have a try.
I sat down in the hospital corridor, no privacy as usual, and I thought about how unfair it all was.
No wonder she was having a meltdown.
I wanted her to have a sibling to have someone else to love, a little friend and a partner in crime. Instead she hadn’t had much of a chance to connect with her little brother, and her Mum had been gone for months when she was just a toddler, and now it was happening again.
Sofia and I reunited after 3 weeks apart, wait for her brother to come out of surgery, so she can meet him for the first time.
Sofia has always had big emotions in that little body.
My heart ached for her when she wasn’t with me. I didn’t know that by having another child I would often have to leave my first born behind.
I felt rage that I had missed 4 months of her life when she was only 2. That time is precious, and I was devastated to have lost it.
How much worse it must have been for her, when time as a child stretches forever in front of you, and your mum is your world.
I took a breath, knowing what I said now had to help her cope with this tumultuous life we were living.
I explained to her that we were always connected.
I tried to think of an image I could paint for her that would made her believe it.
I said that there was a string that went from her heart, to mine, and more strings to everyone we loved.
I said the strings were stretchy and they could reach around the whole world, or be as short as when we were having a hug, chest to chest.
Sofia and I playing the hospital 'lift game' when she was 2 years old.
I don’t know why this worked, but when they got home that week, Si told me that it had.
Sofia was calmer, and less worried about missing me. She would tell everyone that Mumma was in hospital but we were connected with our heart strings.
She’s 6 now and we still talk about it. My father in law died last year and I told her that heart strings could reach all the way to heaven, and they would never, ever break.
I wanted to draw 4 fish with strings connecting them to symbolise our families love for each other, but time was short.
In August we went in for Emilio’s third surgery. We spent 2 weeks in hospital and finished his recovery at home as he was so distressed in the hospital.
I didn’t have time to draw all 4 fish so I settled on the red and blue one to symbolise Emilio and his wonderful heart that was still beating.
I finished it just in time, and sent it off.
A wonderful person bought that painting for £160, all of which went to Heart Research.
I was really pleased with the fish design and decided to use it on my products.
It still makes me think of my son’s miraculous heart, and how connected my family are to each other, even when we’re apart.
When we made it home after the first 4 month stay in London. Look at her face.
If you want to find out more about how research can change lives for children like Emilio, check out the work being done by Dr Mark Rodefeld here.