Stories about: pulmonary hypertension

A diagnosis of Down syndrome motivates a family to go the extra mile

Mae, who has Down syndrome, sits on the bottom of a slide. As she leaves nursery school at the end of each day, Mae Tapley blows kisses to every person she passes on her way to the door. For her mother, Susie, watching teachers and staff step out into the hall to wave to her daughter is a welcome change. Three years ago, when Mae was born with Down syndrome, it seemed like no one knew what to say to her.

“When you have a typical child, people tell you how beautiful they are,” says Susie. “With Mae, no one told us she was beautiful or that she would have a full life until we came to Boston Children’s Hospital. They believed in her from the first day.”

Read Full Story

Saving six: Life before and after transplant

An organ transplant is a life-changing event extending far beyond the operating room, the clinics and the hospital walls. Read about five children, one young adult and their families, whose lives were forever changed by the Pediatric Transplant Center at Boston Children’s Hospital.


Lydia’s liver transplant, a mom’s gift

Living donor liver transplant recipientDawn Cavanagh gave her daughter life twice — first when she was born and, again, when she gave 13-year-old Lydia a piece of her liver last summer. The donor-approval process, which occurs with Boston Children’s partner Lahey Hospital & Medical Center, required hours of medical screening, including an interview with a social worker, who asked if Dawn expected anything in return for being Lydia’s liver donor. “And I said, ‘Of course I expect something,’” explains Dawn. “’I expect her to live a long and happy life, and I expect her to be with me for a long time.’”

More than a year after her liver transplant, for Lydia’s birthday, Aug. 1, the Cavanagh family went on Lydia’s Make-A-Wish trip, a Disney cruise to the Bahamas. “We had so much fun,” says Dawn. “She’s a happy kid. She has dreams. She wants to be a transplant nurse, and she wants to work on 10 South at Boston Children’s Hospital.” 

Read Full Story

Double the joy, following heart-lung transplant

Heart lung transplant recipient Nicole with her twin Isabella
Nicole, left, and her twin sister Isabella

Nearly six months following a heart-lung transplant, Nicole Kouri makes a triumphant return to school, alongside her twin sister Isabella. It was a pact she made with her Dad back in August of 2015, while her friends were lying by the pool, soaking up the final days of summer, and Nicole was lying in a bed at Boston Children’s Hospital.

14-year-old Nicole was born with a ventricular septal defect (VSD) — otherwise known as a hole in the heart — and pulmonary hypertension, a serious condition associated with VSD that makes it difficult for blood to flow properly through the lungs.

Being sick was Nicole’s “normal.”

Read Full Story

Devastation and devotion: A father faces his daughter’s difficult diagnosis

pulmonary hypertension bill shannon o'donnell

Fifteen years ago, days before her graduation from kindergarten, Shannon O’Donnell played in the hallway of Boston Children’s Hospital while cardiologist Dr. John K. Triedman broke the news to her parents Bill and Laura O’Donnell. Shannon’s recent fainting spells were not due to asthma or a vasovagal response. Shannon — their happy-go-lucky, active 6-year-old — had idiopathic pulmonary hypertension, abnormally high blood pressure in the arteries of her lungs.

Untreated, pulmonary hypertension causes the heart muscle to weaken and eventually fail completely. There was — and still is — no known cause and no known cure.

Bill and Laura were shocked. Before arriving at Boston Children’s, the O’Donnells had been told that the fainting episodes were not a big concern and could even be Shannon looking for attention. “It took Dr. Triedman three or four times to tell us before it sunk in,” remembers Bill. “He finally had to look us straight in the eye and tell us that our daughter could die from this disease. We were devastated.”

Read Full Story