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.”

The right care for pulmonary hypertension

Triedman had one piece of good news for the O’Donnells, and her name was Dr. Mary Mullen. A pulmonary hypertension specialist, Mullen took over Shannon’s care and has been her cardiologist ever since.

The first step was for Mullen to confirm the diagnosis with a right-heart catheterization, and then Shannon would need to begin treatment immediately to lessen her symptoms and improve her quality of life.

There was just one roadblock — kindergarten graduation.

The O’Donnells decided to postpone the procedure for five days, so Shannon could graduate with her class. Mullen supported the family’s decision. “We understand our patients’ illnesses in the context of their lives,” she explains. “We work to help them achieve triumphs in their lives and over their disease.”

pulmonary hypertension shannon laura bill o'donnell
Shannon with her parents on kindergarten graduation day

A life-changing treatment regimen

As soon as graduation was over, Shannon underwent the catheterization and spent three weeks in the Cardiac Intensive Care Unit to recover and get comfortable with a complicated medical regimen. She was first prescribed inhaled nitric oxide and later intravenous prostacyclin – both innovative therapies for pulmonary hypertension.

“Mixing the medication, cleaning the central line … all of that was life-changing for us,” says Bill. “But I didn’t bring my daughter to Boston Children’s Hospital to die. I brought her here to live. So Laura and I do whatever we need to make our daughter’s life as easy as possible.”

Shannon’s regimen has worked so well for her that Mullen has made only a few changes over the years. “We love that Dr. Mullen doesn’t jump on the latest fad,” says Bill. “She really looks at the individual patients and sees how they’re doing before she suggests anything. And when action does need to happen, she makes a decision immediately and get things rolling.”

Shannon is a true success story of pulmonary hypertension treatment.

Mullen has been there throughout the journey — celebrating both Shannon’s milestones and the progress that has been made in the treatment of her disease. “When Shannon was diagnosed 15 years ago, we didn’t have all of the knowledge and treatments we have now,” says Mullen. “She is doing incredibly well and is a true success story of pulmonary-hypertension treatment. In the future, we hope to tailor therapy to individual patient characteristics and genetic data.”

From devastation to transformation and advocacy

Click here for insider tips on visiting Boston Children’s, compiled by Bill and other parents.

At 21, Shannon is just as active and happy-go-lucky as she was in kindergarten. Her condition hasn’t stopped her from earning a second-degree black belt in karate and studying to be a certified nursing assistant. “As much as possible, Shannon doesn’t let her illness get in her way,” says Bill. “If you don’t ask her to run or know that she’s connected to a pump 24/7, you would never know she’s sick.”

Now pulmonary-hypertension experts, the O’Donnell’s use their experience to help others. As co-chair of the Boston Children’s Family Advisory Council, Bill leads and promotes family-centered initiatives at every level of the hospital.

“Both Bill and Laura are incredibly involved parents, and have emerged as tremendous advocates for all children with pulmonary hypertension,” says Mullen. “They have taken this experience which has transformed their lives and used it to transform care for other families.”

Learn more about our Pulmonary Hypertension Program.