Kids have #HeartDisease too. #CHD #HeartMonth

February is Heart Month. But I bet when most people think of heart disease, they think about adults and heart attacks, chest pain, blocked arteries. When you scroll through the Heart and Stroke Foundation website, there is a lot of information about preventing heart disease – eating healthier, exercising, reducing stress, quitting smoking. That’s all fine if you are 50, but what about if you’re five?? There is very little on the site about children who live with heart disease, even though congenital heart defects are the world’s leading birth defects. 1 in 100 kids is born with a heart defect. Addison was one of those babies.

Addison was ultimately diagnosed with left ventricular non compaction, or non compaction cardiomyopathy. It’s quite rare so there isn’t a lot known about this particular type of cardiomyopathy. Plus we didn’t get her diagnosis until after the transplant, so we were never heavily involved in the CHD world. Technically, she no longer has heart disease! I guess you could say she has transplant disease, so we’ve always felt instant kinship with other transplant families.

However, we know so many heart families, and so many heart babies and kids. Many of them have undergone multiple surgeries and countless medical interventions to stay alive and thrive. They’re all such incredible warriors. And they don’t go into battle alone. We are so fortunate to have an amazing heart team at BC Children’s Hospital. Cardiologists, surgeons, nurses, echocardiogram and ECG techs, researchers, admin staff, and so many more. This month the BC Children’s Hospital Foundation is featuring 28 stories “From the Heart”, including Addison’s story.

“Mother’s Day — my first Mother’s Day — was when Addison was wheeled into surgery for her new heart. It all started when she was a few weeks old. She wasn’t acting normal. She was cold and pale. And she just seemed unhappy about something. We thought there was something wrong…but we didn’t think it was going to be that wrong. At Children’s Hospital a doctor came out and he said: ‘I’m really sorry to tell you this. Your daughter might not make it.’ And it was like the world just fell apart. Addison had to be put on a heart-lung machine to stay alive, and we were told that her only chance of survival was a heart transplant. Just 36 hours after she went on the donor wait list, a miracle occurred. It was the miracle of the donor family saying ‘yes’ in such a horrible time in their lives. That gave Addison the second chance.” – Elaine Yong, Addison mom. ———————— One in 100 kids is born with heart disease. This February, we’re sharing 28 stories from the heart – one every day of the month. Meet the kids facing heart disease, their families, and the doctors, nurses, researchers and donors who work to help them shine. #ThisIsCare To donate visit www.bcchf.ca/heart

A photo posted by BCChildren’sHospitalFoundation (@bcchf) on Feb 6, 2017 at 4:50pm PST

I urge you follow these stories all month. You’ll be inspired, awed, impressed, teary and joyous. From our hearts, thank you BCCH for helping Addison shine!!

Love,
Elaine, Aaron, Addison and Charlie

 

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