Janna
Janna, mother of Henley, who has had a heart transplant. Henley contracted enterovirus myocarditis which in rare instances can cause serious cardiac side effects.
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My newborn’s emergency Berlin heart and transplant: It’s not like we had a choice.
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In the hospital: I felt like nothing really made me feel better.
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One thing after another: every medical issue requires a solution that may cause another problem
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Finding most of my support from other cardiac parents who already get it.
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Helping parents like us connect with fellow parents helps us feel less isolated.
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I want people to understand more about transplants – to believe that anything is possible.
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My evolution as a parent: Caring about different things than my peers can make the experience isolating at times
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Her medical team knows what we’ve been through and gets it. They become like friends and family.
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If we have another child, I think I may have a lot of repeated trauma of dates and times
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Tips for providers: assess the scene; don’t just start talking; begin with the child
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If we hadn’t gotten married for the right reasons, I think we probably wouldn’t be married right now.
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My evolution as a new parent (and heart mom) has been enormous. At some point you have to manage the reality of your life.
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