Stories about: Dr. Pedro del Nido

Experience Journal: From Venezuela for the chance to live

At five months old, Diana was diagnosed with tetralogy of Fallot with pulmonary atresia, a congenital heart defect (CHD) that couldn’t be treated in her home country of Venezuela. “Being told that your child has no chance of surviving is devastating,” says Diana’s mom, Alejandra. “We were given no hope.”

Research into where in the world Diana would receive the best treatment led her parents to the Heart Center at Boston Children’s Hospital.

Throughout Diana’s journey to health, Alejandra relied on support from her husband, her sisters and the community she found in Boston. “From the beginning, we felt that everyone — from social workers to physicians to staff at the Hale Family Center for Families — worked together so that my daughter could have a chance to live.”

With Diana now through surgery and thriving, Alejandra shares her family’s experience to offer hope and guidance to other families coping with pediatric heart disease.

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Spanish Voices Journal made possible by support from Milagros para Niños

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Experience Journal: Coping with a child’s congenital heart disease

At 16 months old, Avery was diagnosed with an atrial septal defect — a hole in the wall between the heart’s upper chambers that required open-heart surgery to repair. ​

Shock, fear and pride were just a few of the emotions Avery’s parents Jessica and Andrew experienced throughout their journey coping with their daughter’s congenital heart defect (CHD).

The couple found it helpful to talk through their questions and feelings with other parents of children with a CHD, as well as with Avery’s caregivers from the Heart Center at Boston Children’s Hospital. Now with two years of recovery behind them, Jessica and Andrew generously pay it forward by sharing their experience and offering guidance to other families coping with pediatric heart disease.

Avery's journey with congenital heart disease.

 

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Heart Experience Journal, created by the Department of Psychiatry and the Heart Center.

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Francesca’s story: Beating a heart tumor

Francesca, who was diagnosed with a cardiac tumor before she was born, with herAlthough her parents were warned she might not breathe when she was born, the moment Francesca Durkos came into this world, she let out a gutsy cry.

“It was music to our ears,” says her mom.

Michelle Carino Durkos was 40 weeks pregnant when she learned there was a tumor attached to her unborn daughter’s heart — a tumor so large that doctors near her home in Pensacola, Florida, were unsure if the baby would live.

“It was a shock, because at 20 weeks everything was normal,” says Michelle. “We had a wonderful ultrasound; we saw all four chambers.”

Yet, call it a mother’s intuition, Michelle knew something was wrong.

“The whole pregnancy I had this strange feeling. I didn’t want to upset her, so I’d sleep sitting up, as if she was fragile — as if she was in distress.”

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A prom to remember for two heart kids

prom photoIMG_5084 (2)Two kids went to prom together.

Not just any kids — heart kids.

Seventeen years ago, in 1999, Allie and Logan were roommates in the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU), fighting for their lives against heart disease.

They were both undergoing the first two — of three each — open-heart surgeries.

Elizabeth (Logan’s mom) and Amy (Allie’s mom) spent every available moment at the bedside with their new babies — chatting about hearts, hospitals and life. Some days were more difficult than others, and there were setbacks for both kids.

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