Blog
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Teaching the ABCs of CHD to Your Child
For those with CHD falling out of care is a very common problem, which can lead to critical emergency situations. A whopping 61% of children with CHD will stop seeing their cardiologist by the time they are 18, and just 10% of adults with CHD are getting the appropriate cardiac care. In this week’s blog,…
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The Grief in Living with CHD
We often think of grief as the pain felt after the loss of a loved one. Sometimes, with chronic illness, however, we grieve for the loss of our own former selves, of the life we lived as (relatively) healthy young adults, or our hopes for the future. In this week’s blog, Nicole, an adult with…
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Growing Up to be Independent with CHD
Parents do all they can to take care of their children, especially when they’re sick. But patient’s with CHD also need to learn independence, to be able to one day take over and manage their care and futures! This week, Kim shares her story and how her family encouraged her to lead her life on…
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One Patient’s Experience with Arrhythmia
Many patients with CHD also have arrhythmias, sometimes as a consequence of intervention. Rosalie was born with an AVSD and had surgery as a child, but it wasn’t until her teens that her arrhythmia emerged. In this week’s blog she shares her story with us. Everyone has a story to tell. With CHD, sometimes there…
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The Greatest Adventure Buddy
Heart Dads play such an important role in their families – sometimes protector, sometime playmate, but always motivated by love. Father’s Day is just one of the chances we have to say thanks, to show our dads just how much they mean to us, and how their time and support were the greatest gifts a…
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Improving Access to Care for the LGBTQIA+ Community
Access to the necessary care is already a critical issue for teens and adults in the CHD community. But for members of the LGBTQIA+ Community, the added uncertainty over stigma can lead to inappropriate care and even avoidance of treatment altogether. In this week’s guest blog, Joseph Lindsey, a public health professional, discusses the hurdles…
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Supporting Heart Siblings at Home – Part 2
It may be difficult to balance the needs of your child with CHD and those of your heart healthy child. Siblings at home may feel left out or confused, and we may not always know how to best support them. In the final part of this blog series, Nicole Johnson, a Child Life Specialist, offers…
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Supporting Heart Siblings at Home – Part One
It may be difficult to balance the needs of your child with CHD and those of your heart healthy child. Siblings at home may feel left out or confused, and we may not always know how to best support them. In this two-part blog series, Nicole Johnson, a Child Life Specialist, offers insight into how…
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Return to Me & Accurate Representation of CHD in Entertainment
There’s always a bit of a thrill that comes with finding characters with CHD in a movie or a book. It’s an opportunity to our stories on screen, to know, somewhere in the world, thousands of people are reading about CHD. Some get it right, some are a bit off, but every effort to include…
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Stroke Awareness Month – Warning Signs and Patient Stories
May is stroke Awareness Month. Revisit the warning signs of stroke and hear from patients who have survived and thrived after suffering strokes in this Blog Recap reboot. “We can only know how strong we are when we strive and thrive beyond the challenges we face.” Kemi Sogunle