Thank you for taking part in #BigHeartedFriday for Little Hearts Matter.

As many of you will know, Ellis has heart surgery on 8th January this year. Here is some of his story so far...

Ellis is a half-a-heart hero.

Mummy & daddy found out at the 20 week scan that I had a problem with my heart. They were referred to the Evelina hospital in London, where they confirmed my diagnosis - I have Tricuspid Atresia, which means the major pumping valve in the right side of my heart did not form in the womb. I also have two holes in my heart (one ASD, one VSD) and I have Transposed Great Arteries which means my Aorta and Pulmonary Artery are switched around, connected to the “wrong” sides of my heart compared to other people. This means that the blood which needs oxygen from my lungs, and the blood which already has oxygen and should travel around my body are all mixed up – thankfully the holes in my heart mean some of the blood still gets to the right places.

Because of this, I had surgery at 2 days old to keep my holes in my heart open as they are keeping me alive(!) I also had open heart surgery at just under 4 months old to begin the transition to only use half of my heart for pumping blood, this took place over Christmas 2018 and we spent my first Christmas and New year in hospital which was very tough on Freya as she was only 3 years old.

Since then I had one further open heart surgery during the height of covid in January 2021. This experience was even more difficult as only one parent was allowed at hospital and Freya couldn't visit at all. We had to tag team between hospital life and home schooling!

On Monday 8th January 2024, I had Mitral Valve repair, which is actually the same op I had in 2021. It needed repeating as it didn't have the outcome we hoped for the first time around. I needed this operation in order to try and have a suitable valve for the final planned surgery for children with the type of condition I have. This operation is called the Fontan, and gives me the best possible chance in life (so that's the goal for us!) (Interesting info here if you'd like to know more. https://www.lhm.org.uk/the-fontan-pathway-film/)

A little over 30 years ago, the series of surgeries which Ellis will have, were not around, and if it weren’t for these operations, he would not have survived.

Aside from all this, as any of you who see him often will know, he's a very happy boy who loves life and most of the time you wouldn't really know there's anything wrong with him at all!

Thank you for supporting a charity which has helped us feel less alone by connecting us with other half-a-heart warriors & their families ❤️💙

Ellis, Mummy, Daddy and Freya xx