Stories of Getting Better at Children's Hospital Colorado
Treating a Heart That Works Overtime
Written by Teresa, mother of 10-year-old Eryn.
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 Children’s Hospital Colorado. 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. For her first several years of treatment, Eryn wore a small backpack that contained an IV central line, a pump, and a mix of medications that pumped directly into her heart every 90 seconds. This solution, along with several oral medications she took on a daily basis, allowed Eryn to do the same things as other kids her age, but with an array of stylish backpacks.
Today, Eryn no longer needs the backpack filled with an IV and heart medication. She's doing wonderfully and is a happy camper. One of Eryn's dad's favorite memories was her "backpack-ectomy" party. When the doctors said she could be backpack-free and just take oral medication, we threw a party and hung her old backpack from the ceiling to celebrate taking it off. What a happy day.
Eryn is now almost 11 years old and beating all odds. She only visits Children’s Hospital Colorado for quarterly checkups and routine tests. Her condition is currently under control, and we sleep better at night knowing that Dr. Ivy and Children’s Hospital Colorado are close by.
Read another patient story about Samantha, the recipient of two heart transplants.