“Without Children’s Heart Surgery Fund, Reggie wouldn’t be here.”
Michelle, Reggie’s mum
Written by Reggie’s mum, Michelle
Reggie was born on the 1st September 2016 with a palliative congenital heart disease called hypoplastic left heart syndrome. Although you might not know to look at him, Reggie’s heart is extremely poorly.
When we had his diagnosis at 20 weeks, we were given three options: abortion, comfort care or surgery. We chose surgery as we needed to let him have that chance.
Congenital heart disease is the biggest childhood killer, and Reggie is high risk for things like stroke, cardiac arrest, endocarditis…
Although we knew the possible outcomes, we still wanted to let him have the chance. We say that it’s his fight. When he’s tired, that’s his choice to stop! We will guide him as much as we can.
At four days old, Reggie needed his first open heart surgery. The operation was nine hours long. After three days, he needed to go back to theatre and be opened up again due to an infection. He came home in October, just in time for his mummy’s birthday.
In March the following year, Reggie needed another open heart surgery. He was so strong, but he had a really tough time with another infection, this time in his PICC line. We were home after eight days.
It hurts every day knowing that this CHD could just randomly take him unexpectedly or that when he needs a transplant, will he manage to hold on?
Imagine waking every day knowing it could be your child’s last.
Now age 6, Reggie is waiting for his final surgery.
He’s been on the list for the last year, but we haven’t had the call just yet with COVID and new babies being born with CHD that have taken priority.
Children’s Heart Surgery Fund are amazing. If you could donate this Wear Red Day, even if it’s £1, it will go towards saving a child like Reggie. Thank you.
Please register to take part in Wear Red Day this year, so you can help us raise vital fund and awareness to support children like Reggie. Thank you.
15 amazing heart stories to round-up Heart Month
You not only raised significant donations for CHSF in and around February for Heart Month, but with your help we communicated our cause loud and clear to every corner of the region through your stories! Here’s a round-up of just some of the blogs and local news which...
Luca’s Story
When Luca was born, mum Emma and dad Michael discovered Luca had a very loud heart murmur. The day after, they were transferred from Jimmy’s to the Leeds Children’s Hospital for a heart scan. It was then when they received the congenital heart disease (CHD) diagnosis...
Alfie’s Story
17-year old Alfie’s family found out he had congenital heart disease (CHD) when he was just 2 months old. Following multiple procedures, Alfie is now enjoying life both as a teenager and keen LUFC supporter, as mum Kirsty tells us: “Alfie was only 7 weeks old when we...