Category: Advice Videos

Advice from Nina: A Five-Year-Old Heart Warrior’s Perspective

Posted on by Elsbeth DeLeon in Advice Videos

Nina is a spunky five-year-old who has already been through more in her lifetime than most will ever experience. She’s full of sass and her wise advice is on point. Listen to Nina’s advice for kids and parents on their heart journey. She gives me so much hope!

Here’s a little background on Nina, from her Mom, Lani:

Diagnosis (given at 20 weeks gestation):
Surgeries:
–Norwood / BT shunt at 8 days
–UnifocalizationUnifocalization for MAPCAs and shunt upsize at 6 months
–Glenn shunt at 21 months
–Fontan at 4.5 years
History:
Nina had her first surgery at Dell Children’s in Austin, TX and hit a number of complications: she suffered hemi-diaphragm paralysis and was ventilator-dependent for 2 months; she suffered bilateral vocal cord paralysis and was trach-dependent for 15 months; she could only digest small volumes of breast milk via an NG tube because of poor blood perfusion to her gut thanks to her MAPCAs (major aortopulmonary collateral arteries), and she had multiple cases of “medical NEC” along the way. Nina’s first year or so of life was a real doozy, and she didn’t come home from the hospital until she was 8.5 months old — something we definitely hadn’t planned for. Her last 3 heart surgeries have been out at Stanford Children’s in Palo Alto, CA and she has exceeded all expectations. She loves monkey bars, dinosaurs, acting, karaoke, and sushi. We never dreamed she’d be doing this well, and we’re so thankful that we found the perfect surgical center for her complex cardiac care.

Advice From Sean and Lani: Participate, Expect the Unexpected, and Practice Self-Care

Posted on by Elsbeth DeLeon in Advice Videos

Sean and Lani are the parents to Nina, an incredible five-year-old heart warrior with a single ventricle heart, hypoplastic right heart syndrome (HRHS), pulmonary atresia, tricuspid atresia, and MAPCAs. Nina has undergone the Norwood procedure/BT shunt at 8 days old, unifocalization for MAPCAs and shunt upsize at 6 months, Glenn shunt at 21 months, and Fontan at 4.5 years.

Watch for our next post with Nina!