Hypoplastic Left Heart Syndrome

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Mighty LeaderSuper Contributor

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#adultchdwarriors #AmericanHeartAssociation #CongenitalHeartCondition #CongenitalHeartDefectDisease #chdwarriors #ChronicIllness #OpenHeartSurgery #HeartTransplant #PosturalOrthostaticTachycardiaSyndrome #TranspositionOfTheGreatArteries #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #RareDisease

Adult CHD Warriors 2y

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Do you celebrate Surgery Anniversaries? #Disability

Sometimes surgeries can be a source of trauma but other times surgeries are life saving and well met. Do you celebrate them or let the days pass like any other?

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a mother cradling her newborn baby with a nose canula

For every parent of a child with a birth defect, there is a before and an after. Whether the line is drawn in the darkness of an ultrasound room, in the silence of a NICU nursery, or in the bustle and shock of an ER, it is there for each one of us … dividing [...]

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Birth Defect

How to Embrace Your Child's Birth Defect

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Coronavirus Disease 2019 (COVID-19)

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Hey, World: My High-Risk Child Matters in This Pandemic

I think we can all agree that a year and a half into an unprecedented viral pandemic, nobody is exactly thriving. Every human on earth is bearing the burden of extra restrictions, extreme isolation, and increased fear and grief. The suffering has been widespread and universal. No one is exempt; no one has been unscathed. [...]

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Mighty LeaderSuper Contributor

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Adult CHD Warriors 2y

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Hypoplastic Left Heart Syndrome (HLHS)

Great diagram from Children’s Heart Foundation.
Anyone have HLHS?

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Mighty LeaderSuper Contributor

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#adultchdwarriors #TetralogyOfFallot #HypoplasticLeftHeartSyndrome #HypoplasticRightHeartSyndrome #PosturalOrthostaticTachycardiaSyndrome #Disability #RareDisease #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries

Adult CHD Warriors 3y

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How did you feel about your transition of care from a pediatric cardiologist to an adult cardiologist? #CongenitalHeartDefectDisease

Did you have to transition to an adult specialist cardiologist once you turned 18? Or were you able to stay with a pediatric specialist cardiologist? I had the worst time of it. My parents had to constantly fight with insurances to get me with doctors that understood my condition. Then when I turned 26 and had to go on my own insurance and the insurance I was with and doctor I was put with was extremely negligent with me for four years. By the time I finally was able to get on a different insurance and doctor I was in bad shape and almost died. I’m lucky now to be with an adult specialist cardiologist.
Anyone had issues with their care or gaps in their care? Most adults with congenital heart defects don’t get the care they need.

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a mom sitting with her toddler in a hospital bed

Hypoplastic Left Heart Syndrome

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3 Things to Know Before Your Child Has Open-Heart Surgery

Your child is going to have open-heart surgery. You are going to be just fine. Trust me, no one wants to be in your position — it’s heartbreaking. But many of us have gone before you, and we know what it’s like to feel helpless and scared, and to do the hard thing anyway. You [...]

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Congenital Heart Defect/Disease

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Tips to Achieve Radical Acceptance of Your Baby's Congenital Heart Disease

If you are reading this, it’s because you and I have something in common. At some point, both of us went into an ultrasound room feeling great and came out sobbing. Your child, like mine, has been diagnosed with a congenital heart disorder. I’ve been dealing with the reality of my son Malcolm’s diagnoses for [...]

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Congenital Heart Defect/Disease

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What My Congenital Heart Defect Has (and Hasn't) Taught Me

Caroline Shelton

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What My Congenital Heart Defect Has (and Hasn't) Taught Me

I’m pretty open about my heart defect. It’s obviously a big part of my life, and I guess I’m just the type of person who talks openly about stuff like that. My heart defect is such a big part of my life, actually, that it comes up pretty easily in conversation. Usually, I just say [...]

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Mighty LeaderSuper Contributor

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#CongenitalHeartDefectDisease #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome #TranspositionOfTheGreatArteries #chdwarriors #adultchdwarriors

Adult CHD Warriors 3y

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6 facts about CHD

Did you know some of these CHD facts? I was thinking of starting a series of different heart conditions and some facts about them. What would everyone like to see? What is some information you would like to know or would like others to know more about?

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