“We are waiting for the biggest gift of our lives.”
Kathleen Yago of San Francisco is talking about her 20-month-old baby Hana, who was healthy until she was five months old. Problems started in February 2015, with a cough that led the Yagos’ to the ER near their home.
“Several echocardiograms later we knew Hana had an enlarged heart, so severe that she was brought on Stanford Life Flight to Packard Children’s,” recalled Yago.
The Heart Center’s diagnosis was dilated cardiomyopathy, a disease where the heart muscle becomes enlarged and stretched (dilated), which causes it to become weak and pump inefficiently. After two weeks in the cardiovascular intensive care unit and a third week in the hospital, Kathleen and husband Paul were able to return home with their baby and manage the condition with medications.
In November 2015, the Yago’s lives were again jolted by another trip to the ER. This time it was a collapsed lung - Hana’s enlarged heart was crowding her lungs. In the end, Hana needed a new, donated heart in order to save her life. So, in early December, Hana was put on a Ventricular Assist Devices (VAD) - the Berlin Heart - and the decision was made by the care team to list Hana for heart transplant.
The Berlin Heart is a heart pump that maintains blood flow in babies and small children with serious heart failure, it is the only FDA-approved bridge device for infants. (Lucile Packard Children's Hospital is the only hospital in Northern California to offer the pioneering therapy.)
“Without the assistance of the device, children awaiting a transplant become increasingly sick as their heart fails,” said Hana’s cardiologist, Seth Hollander, MD. “This device improves circulation and keeps the heart working until a heart transplant is possible.”
“She is shockingly well-adapted to being attached to the machinery. It didn’t take long for her to sense where the cords are,” said Yago, “She’s skilled at stepping over and around.”
The average wait on the transplant list for a patient like Hana, who is listed at the highest priority, is 6-8 months. Being on the Berlin means Hana will remain an inpatient until transplant. Between clinic appointments, physical therapy and blood draws, Hana likes to roam around the hospital on scavenger hunts and wave to the cars out front of the hospital, where mom, Kathleen likes to get her outside at least once a day.
“She is so friendly - she loves to say hi to folks anywhere she is,” said Yago. “You never want to have your child have to experience an illness, but when faced with this, we are grateful to be here. Now we are just waiting.”
Samantha Dorman is media relations manager at Stanford Children's Health.
Photo courtesy of the Yago family