If auburn-haired Evelyn only had one of her health issues to cope with, she’d still have a lot going on, but this cardiac issues were this sweet three-year-old was born with were just the beginning. They’ve meant a surgery to put a band around her pulmonary artery and another to patch holes in her heart and create two heart valves out of the one – and then another to remove dangerous scar tissue which was forming a blockage in her valve reconstruction. Evelyn was also born with no major vessel leading to her liver – which means many tiny vessels developed instead. In fact, this condition causes blood vessels to sprout up where they’re not supposed to – rather like varicose veins – but in her stomach and esophagus and leave her prone to life-threatening internal bleeding. Evelyn has bled out several times and been admitted to the PICU where she is treated with IV medication to stop the bleeding, transfusions, and even surgery to “cauterize” the vessels with injections.
Evelyn has an underlying rare metabolic condition of which there are only around 40 documented cases in the entire world. Even within those 40 cases, Evelyn is still very unique – which makes it difficult to predict exactly what the future might hold. As part of her condition, Evelyn needs immunity boosters, and despite receiving a weekly shot at home, she’s immune-compromised and is hospitalized frequently for infections. With Evelyn’s situation being so complicated, it’s no surprise she relies on experts across Canada. She has had several long surgeries at Sick Kids Hospital in Toronto in an attempt to replace and then to divert the main vessel to her liver which unfortunately failed so when she’s big enough she’ll need a liver transplant. For the time being, though, this condition is being watch closely and managed.
Mum Marie-Claire says that while they have received care at children’s hospitals all over Canada (Sick Kids, Stollery and CHEO) the Alberta Children’s Hospital is second to none – like home. Evelyn’s journey with the hospital started out with Cardiology and that’s where their love for this hospital began – with veteran cardiologist Dr. Joyce Harder, and now with Dr. Harder’s daughter – now cardiologist – Dr. Erika Vorhies caring for her. But everyone who treats Evelyn – from Dr. Cathy Ross and the team in the PICU who have saved her from her numerous internal bleeds…to Metabolics specialist Dr. Walla Al-hertani who has samples from Evelyn sent all over North America looking for answers and more information on her underlying condition…to Dr. Steve Martin in GI who keeps an eye on her liver and her vessels…to Sarah the music therapist who has always been able to calm and distract Evelyn during unpleasant procedures as well as contributes to her speech development…Marie-Claire says they are part of the family and love Evelyn as if she were their own.
To hear more stories like this or to donate to the 2017 Caring for Kids Radiothon in support of the Alberta Children’s Hospital Foundation visit www.KidsRadiothon.com