Frank and Anna Jaworski's baby, Alex, was born in 1994 and was seemingly ok...to the doctors and nurses. Frank and Anna disagreed. Alex was showing many symptoms of concern including not feeding well, tachycardia, not gaining weight, jaundice, and lethargy. Frank and Anna were continuously gaslighted until Alex's problems became emergent at just two months old. From there, a miracle began to take shape as Alex eventually landed in the right doctor's arms and a diagnosis was made: hypoplastic left heart syndrome. Alex would undergo three open-heart surgeries in before he was 18 (we cover two in this episode) all at University Hospital in San Antonio, Texas.
This story is an incredible story of hope and highlights the importance of listening to your instinct and advocating for your child(ren).
Anna speaks interchangably about Alex and Hope. Alex made the transition to a woman in her early 20s and now goes by Hope. I hope to have Hope on this podcast soon.
Anna is now a fierce advocate for those suffering with congential heart defects. You can find her, her podcasts, and other resources at www.heartsunitetheglobe.org
Her publishing company is www.babyheartspress.com.
Medical terms used in this podcast include:
Hypoplastic left heart syndrome
single ventricle
Norwood procedure
bi-directional Glenn
Hemi-Fontan procedure
B-T-T shunt (Blalock-Thomas-Thomas shunt)
Dr. Park was Alex's former cardiologist
Dr. John Calhoon is Alex's cardiothoracic surgeon
ASD = atrial septal defect
VSD = ventricular septal defect
TGA = transposition of the great arteries
PDA = patent ductus arteriosus
PFO = patent foramen ovale

Anna's books:

"Hypoplastic Left Heart Syndrome: A Handbook for Parents"
"The Heart of a Mother"
"The Heart of a Father"
"The Heart of a Heart Warrior" (this is my newest book)

websites:

www.heartsunitetheglobe.org
www.babyheartspress.com

Website: The Heart Chamber (theheartchamberpodcast.com)

Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)

The Heart Chamber (@theheartchamberpodcast)

Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director