Last year, Freddie was the first child in the UK to undergo the innovative Yasui repair instead of the Fontan.
Freddie was born with Hypoplastic Left Heart Syndrome and a large VSD and since 2016 had already overcome multiple heart surgeries.
Mum Casey shares Freddie’s awesome story of resilience, and how their family have been supported by CHSF throughout their journey so far…
Freddie mum, Casey, said:
“When I went for my 20-week scan back in 2016 it never once crossed my mind that there may be a complication, but there was. What I now know to be a large VSD (ventricular septal defect), in my baby’s heart.
“The left-hand side of the heart hadn’t developed either. I was now learning all about Hypoplastic Left Heart Syndrome.
“In March 2017, Freddie was born and at 6 days old went for his Norwood surgery. 6 weeks and many complications later, we were home knowing it wouldn’t be long before we were back for another surgery.
“At 8 months old (October 2017) came the Glenn, and in 5 days my warrior of a son made it home again. It nearly felt like life had finally begun for him, but we had the Fontan hanging over our heads for the next few years.
“By some miracle, the VSD had urged the left-hand side of his heart to stretch and grow and in June 2023 we got the call.
“Freddie would have his next surgery in August, but they were going to try a Yasui repair meaning he would have bi-ventricular function rather than single ventricular.
“His recovery was long and tough, and he fought so hard. He made it over every obstacle, and I am so proud to say 5 months later, Freddie is like a brand-new boy.”
“After a staggering 15-hour surgery, my son became the first child in the UK to have the Yasui instead of the Fontan. His recovery was long and tough, and he fought so hard. He made it over every obstacle, and I am so proud to say 5 months later, Freddie is like a brand-new boy and has a new lease of life! We are so excited about what the future holds!!
“Children’s Heart Surgery Fund were such a huge help to us whilst we stayed in hospital, not only once but 3 times over the last 6 years.
“From the smallest gestures such as a coffee voucher to bringing fans when it was hot and calling in just to say “hi” – it really is nice to see different faces when you’re stuck in the same four walls.
“Freddie struggled immensely during his last stay. His drains had to stay in for 4-5 weeks, he was in pain and his mood was low.
“The CHSF team would come in and play games with him, to take his mind away from the pain even if it was just 10 minutes.
“Being able to stay so close to Freddie and not travel back to Doncaster every day was also a godsend, it saved us hundreds of pounds on fuel and hotel stays.
“We truly are grateful for everything! Thank you!”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Freddie every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
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