Stories of Getting Better at The Children's Hospital

“The other doctors were basically telling us that nothing was wrong.”
by Teresa, mother of 6-year-old Eryn

Eryn was finally correctly
diagnosed with pulmonary
arterial hypertension, a
progressive lung disease
that causes heart failure if
left untreated.

We had only been parents for three short months when our 16-month-old first started getting sick. Eryn had come to us from an orphanage in China, where babies slept on bare plywood with no blankets. Since the moment we met, all we had wanted was to give her a safe and healthy life. You can only imagine our panic when she began fainting, sweating and having an unusually fast heartbeat.

The scariest part was not knowing what was wrong—or how we could help her. We showed up at our local family physician’s office once a week; he attributed the fainting to Eryn holding her breath, but never could come up with an actual diagnosis.

When Eryn’s symptoms got worse and her legs began to swell, we reached a boiling point. We bypassed our local physician and took Eryn directly to The Children’s Hospital. It was a difficult diagnosis that took three days, but finally we knew what was wrong. Eryn had pulmonary arterial hypertension, a progressive lung disease that causes heart failure if left untreated.

We started seeing Dr. Dunbar Ivy, one of the top two pediatric specialists in the nation for exactly Eryn’s condition. It still amazes us that a nationally renowned specialist was 30 minutes from home the whole time.

There were a couple scary options for Eryn, but Dr. Ivy worked with us to provide the gold standard in treatment. Now, Eryn wears a small backpack that contains an IV central line, a pump, and a mix of medications that is pumped directly into her heart every 90 seconds. This solution, along with several oral medications she takes on a daily basis, has allowed Eryn to do the same things as other kids her age, but with an array of stylish backpacks. If this treatment were to cease to be effective, Eryn would be a candidate for a very risky heart and lung transplant.

Eryn is now six and a half years old and beating all odds. She only visits The Children’s Hospital for quarterly checkups and routine tests. Her condition is currently under control, but we sleep better at night knowing that Dr. Ivy and The Children’s Hospital are close by.