Child's Diagnosis: Shone's Complex
Has Kerrington’s Heart impacted your journey? If so, how?
Kerrington's Heart provided financial assistance when we first found out about Evie's diagnosis and sent us care packages while we were in the hospital. More importantly, though, they provided emotional support and helped us feel less alone. From Heart Mom Meetings to fun events to phone calls to educational opportunities, Kerrington's Heart has been by our side every step of the way. I can't emphasize enough how much this organization has done and continues to do for us and families like ours or how much this group of volunteers, parents, children, and family has come to mean to us. They have become family.
What’s one thing you wish you’d been told at the beginning of your journey?
I wish I'd been told to speak up while in the hospital: to ask questions, insist on answers, and if I don't understand something, make them explain it to me in a way I can understand.
What’s one word you would use to describe your journey and why?
Surprising. You can never really prepare yourself for how difficult the journey will be, but it is also surprisingly beautiful. There are no little steps or small accomplishments, so every step forward is a bright, shining light.
Please share a little bit about your story.
Evie was born on September 7, 2016 with Shone's Complex. Originally diagnosed prenatally with Hypoplastic Left Heart Syndrome, they discovered additional defects after she was born and during her subsequent cardiac caths and surgeries. The initial 8 months of her life were spent, almost entirely, in the hospital. Due to complications following her second open heart surgery, Evie almost died, and we spent much of those months praying for a miracle. In spite of her bumpy start to life, Evie is now happy and thriving at home. She is feisty and sassy and loves playing outside, squealing at the cows that border our property, flashing lights, music, and bouncing. She will have at least one more heart surgery after her 3rd birthday, but for now, she is enjoying ruling her kingdom from the comfort of home.