Date Of Birth: 2025-06-27
Date Of Passing: 2025-07-04
Freddie Rhys Jones was born almost 5 weeks early on June 27th, 2025 at 6:41am via emergency c section weighing 6lb 2oz.
I knew Freddie was going to be born poorly, as he was diagnosed with a Congenital Diaphragmatic Hernia (CDH) at 24 weeks. I was told to prepare to lose him before he was even born, then when he was born I was told he wouldn’t survive long.
Initially, Freddie proved everyone wrong and did absolutely amazing. He came out crying, which they said he wouldn’t, the team were so impressed with him. He was intubated straight away and I got to have a little kiss and a cuddle before they took him off to the NICU.
Freddie stayed stable for his first night and I got cuddles with him on day 2, which I was also told would never happen.
On day 3, he was transferred to Alder Hey for his repair surgery on his diaphragm and on day 4, he had his surgery, which went amazing and he sailed through it.
On day 5 and 6 Freddie was doing good, I had more cuddles and there was even talks about extubating him over the next few days and getting him ready for his next steps in recovery.
However, on day 7, Freddie took a turn for the worst. It was very sudden and came from nowhere, one second he was fine, the next he wasn’t. Freddie was suffering from Pulmonary Hypertension (high pressure in his lungs) which eventually got too much. They tried absolutely everything, but eventually I had to make the decision to turn his machines off and let him go, as there was nothing more to be done.
Freddie passed away on July 4th, 2025, in my arms. It was very peaceful.
I miss him every single day but will now spend the rest of my life raising awareness for this condition that takes so many babies lives each year, but isn’t heard of to most people until they go through it.
