“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.
WEAR RED FOR EVIE
Heart warrior Evie is just one of the thousands of babies, children and adults living with congenital heart disease in our region who are supported by CHSF. Evie's mummy Chelsea has kindly told us all about their family's story so far and why they'll be wearing red...
WEAR RED DAY: Stair Climb Challenge
During the first lockdown heart warrior Owen decided he would like to do a Stair Climb Challenge to raise funds for CHSF... ...and it wasn't long before his classmates wanted to step up to the challenge and get fundraising!Owen researched the how many steps it would...
WEAR RED FOR SOPHIA
Heart warrior Sophia was born in May 2020 with complex heart problems and was christened in the neonatal unit at Leeds Children’s Hospital. We spoke to Sophia's mummy Charlotte about her little heart warrior's journey so far...Sophia was born in May 2020 Our journey...