Miss Penelope (Penny) Sue Birgen was born on February 13, 2017, at main campus Children’s Hospital of Colorado and received her first open heart surgery when she was five hours old. Her medical diagnoses include heterotaxy syndrome with congenital asplenia, complete AVSD with common valve, obstructed TAPVR, DORV (TGA type), pulmonary valve stenosis, pulmonary hypertension, pulmonary vein stenosis and history of thrombosis.
Penny went on to have three more open heart surgeries that included a complex biventricular repair, all before she turned one year old. She has had two strokes, multiple emergency events including two stints on ECMO and her longest stay in the hospital has been 14.5 continuous months. Penny has had over a dozen cardiac caths and other surgeries including g-tube, trach, and numerous central lines. Her diagnoses suggested she may not survive long after birth, but this bright little ray of sunshine has always had her own plans.
Penny spent over four years of her life trach and ventilator dependent and graduated from trach dependency in June of 2022. She experienced a significant stroke in January 2022, and has continued to make amazing progress towards walking independently.
She completed 1 st grade this past spring and is excited for 2nd grade this fall. She thrives in her numerous weekly therapies that include physical, occupational, speech, music, swim, and horse therapy. The milestones her parents cautiously dreamed she would meet she has reached and surpassed, all with a positive attitude and insatiable thirst for experiencing life.
This fiery red head is the sunshine of our life who adores her two older brothers. She’s the bright cheery alarm clock who greets her family and nurses with “Good morning” early every morning. Penny is an amazing seven-year-old who sees no limitations on what she can accomplish in her lifetime and despite her physical and cognitive disabilities you will always find her in the middle of every fun thing happening with a smile on her face.
Her entire family is so incredibly grateful for the Heart Institute at Colorado Children’s Hospital, and everything that they have done to turn a grim pregnancy diagnosis into an amazing survivor’s story.
