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