Théo and his family

Théo-Ben, our heart warrior, our fighter and our whole world.

My nephew and his partner found out she was pregnant on the 20th March with their little bundle of joy. The day they found out was the happiest day of their life, his mum struggled to conceive and thought she wouldn’t ever be able to become a mummy. That all changed. The pregnancy was flying by. They had scans, their gender reveal where they found out mummies wish had come true and she got her very own little boy. Their best friend. They started to plan everything, days out what their life would be like with 3 boys. It was crazy to think about, but they were so excited. They got sent for a scan on his stomach at 32 weeks which they noticed something with his heart and referred them to a heart specialist. At 33 weeks their m world come tumbling down and they got the devastating news that their baby boy had a serve heart condition called ‘hypoplastic left heart syndrome’. They didn’t know what to think or do, thru still remember asking ‘are we going to lose our boy’ they said it was a 50/50 chance and it depends on how he is after birth. They were gave the option to terminate the pregnancy and said no, they wanted to give him the chance to fight as he made it to 33 weeks, they wasn’t going to give up on him. Fast forward to 38 weeks and 1 day and Théo-Ben decided to make an appearance, he came in to the world kicking and screaming, they was loads of NICU doctors and nurse surrounding the bed, as mum only got a two minute cuddle, dad got to cut the cord but after a two minute cuddle they took him off her and whisked him to the NICU to get him on his medication.

Our little warrior had his first open heart surgery at four days old, the Norwood. It was successful, but caused complications for his diaphragm on the left side. Which left it paralysed, he had his first diaphragm plication at 5 weeks old, which failed after 3 days. Which then lead to other complications as breathing problems, not maintaining his oxygen saturations and many many stays in the ICU and HDU he was intubated many times, over the 5 months. February 2023 he got admitted to ICU and he was touch and go, we didn’t know if we was going to lose him, the doctors nurses and consultants told them to take it day by day with him. His saturations would drop and they once called it at ‘ death defying desaturation’ both mum and dad was going out of their minds and thought the worst but also held on to the positives. He pulled through and showed everyone what a fighter he is. He had his 2nd plication on the 8th March at 4 months old and this time it was a success. He’s doing amazing. Théo-Ben has now had his second heart surgery, the Glenn at 5 months old and is on the road to recovery with a few minor set backs. Théo-Ben fought hard and made it home to be a family of 5 at 8 months old. Going back to the hospital for any appointments. Unfortunately a scan shown that he had too much pressure around his heart and lungs which means another big operation in September. This means that once again their family will be split again as Théo-Ben will require another long stay in hospital to recover. Mummy and daddy will be with him in Liverpool whilst the biggest boys are back at home with Granma.

But we have faith in our little warrior. It’s been a long hard 9 months for mummy and daddy but they wouldn’t change their story or their journey for anything. They would do it a millions times over if meant they got the same little boy, their little Théo-Ben.

If you can’t donate, please share.