As 20-month-old Hana awaits “the biggest gift” of a new heart, doctors at Packard Children’s are extending her failing heart’s life

By Samantha Dorman

“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.

It all started in February 2015, when Hana’s cough led the Yagos to the ER near their home in San Francisco.

Diagnosis

“Several echocardiograms later, we knew Hana had an enlarged heart. [The condition was] so severe that she was brought on a Stanford Life Flight to Packard Children’s,” Kathleen recalled.

The Heart Center’s diagnosis was dilated cardiomyopathy, a disease where the heart muscle becomes enlarged and stretched (dilated). As a result, the heart becomes weak and pumps inefficiently. After two weeks in the cardiovascular intensive care unit and a third week in the hospital, Kathleen and her husband Paul were able to return home with their baby and manage the condition with medications.

Treatment

Things were going well until mid-November 2015, when the Yagos’ lives were jolted by another trip to the ER, this time for a collapsed lung. Hana’s enlarged heart was crowding her lungs, and she needed a heart transplant in order to save her life. On Monday, December 7, Hana was put on a Ventricular Assist Device (VAD), also known as the Berlin Heart, and the decision was made by the care team to list Hana as a candidate 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 Stanford 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,” explained 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 Kathleen Yago. “She’s skilled at stepping over and around them.”

The average wait time for a heart transplant candidate like Hana, who is listed as “highest priority,” is 6 to 8 months. Since she is on the Berlin Heart, Hana will remain an inpatient at Packard Children’s until transplant. In between her clinic appointments, physical therapy sessions and blood draws, Hana likes to roam around the hospital on scavenger hunts and wave to the cars out in front of the hospital. Her mom 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 your child to have to experience an illness, but when faced with this, we are grateful to be here. Now we are just waiting.”

Learn more about the Yagos’ journey on their blog www.hanasheart.com

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