Stories about: Dr. Pedro del Nido

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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Meet Paz: Paraguay’s HLHS pioneer

Before Maria de la Paz was born, her parents Violeta Gustale and Orlando Cazal learned their unborn daughter had a complex congenital heart disease called hypoplastic left heart syndrome (HLHS).

With HLHS, the left side of the newborn’s heart is so underdeveloped that it cannot pump enough oxygenated blood throughout the body. The standard treatment is a series of three corrective surgeries to re-route blood flow through the heart. The first surgery is performed at birth, the second at six months and the third about two or three years later.

Violeta and Orlando were presented with four options:

  • Travel from their home in Paraguay to Boston Children’s Hospital for treatment. The Boston Children’s Heart Center had a 95 percent success rate for the surgeries Paz would need (this was in 2011; today, that rate is 97 percent).
  • Go to São Paulo, Brazil, where the best hospitals had a 75 percent success rate for the same surgeries.
  • Go to Buenos Aires, Argentina, where surgical success rates hovered around 50 percent.
  • Stay in Paraguay and have the surgeries there. Paz could be the country’s first success story, and the hospital would cover all medical expenses.

They made their decision right away. Their daughter would be born at Brigham and Women’s Hospital and treated at Boston Children’s.

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