Katie-Rae

Katie-Rae Edmunds underwent three major heart operations before the age of three and she was never expected to survive.

“Cheeky and determined” Katie-Rae (now five) was born with Hypoplastic Left Heart Syndrome and she has suffered several brain bleeds. No one knows what her future holds.

Over the last 18 months, her parents, Nicola and Neil, have relied on the support of our charity.

“We were told Katie-Rae had a 30 percent survival chance,” said Nicola. “She had a heart operation at three-days-old, another at four-months-old and then again at three-years-old.”

Tragically after the last heart operation, Katie-Rae suffered a bleed on the brain following a silent stroke. She had urgent surgery to remove the damaged cells and drain the fluid.

Katie-Rae then alternated between settling on the ward, to being rushed to the Paediatric Intensive Care Unit, because of clots on her brain and then a second bleed.

“At this point, we were told the worst; that there was no coming back,” said Nicola. “We were asked to sign a Do Not Resuscitate (DNR) and this is when we were introduced to the support of Rainbows.

“Her brain was so swollen, it was out of her skull. We were told that if she were able to breathe on her own, her heart might not stand it once she was taken off life support. But she breathed on her own, which was a surprise to everyone.

“We left the ward unaware of what was to come. Suddenly, she made a complete U-turn and at that point, no one could believe it. She was a walking miracle. She slowly started to talk and do facial expressions.

“Rainbows has supported us all the way though. Our Family Support worker was my go-to for all concerns and support and they have helped me so much with my mental health.

“For our son, SJ (nine), it has been a lot for him to go through and he has benefited from Rainbows’ Sibling Support Services.

“Without Rainbows we wouldn’t have been able to manage, even if it is for Katie-Rae to have that break so we can put SJ first. He would be in a different place if it wasn’t for Rainbows. Katie-Rae loves being at Rainbows too. She is very strong minded and amazing at what she does. She takes everything in her stride.”

Katie-Rae’s condition is now more stable and she talks very well. She is learning how to walk again and adapting to being blind. But tragically, her parents know time is precious.

“When her heart starts to fail, she will be in heart failure and that is it,” said Nicola. “We know there is no option for more surgery, which is hard. We don’t know what the future holds, we just have to live each day, and each day is a blessing.”