Patient Update: Hana’s busy being a happy toddler with her new heart

We caught up with Kathleen Yago and her daughter Hana in a room full of music, tambourines and voices singing all the favorites, from the “Wheels on the Bus” to “Twinkle, Twinkle Little Star.” The Lucile Packard Children’s Hospital Preschool was closing out their day with hospital musician Jeff Buenz, who led the group of toddler patients, and their parents and care teams, in song and play.

Back in May 2016, we introduced you to Hana Yago, who was living at Packard Children’s while awaiting a heart transplant. She relied on a ventricular assist device known as the Berlin Heart to do the vital work of keeping her blood flowing.

When we spoke to her this time, Hana, now almost two, was no longer attached by numerous cords to the machine that had sustained her failing heart for 6 months. Today, the Yago family of San Francisco is one step closer to home and leaps and bounds closer to a “new normal.” Thanks to the ultimate gift of organ donation, Hana received her new heart on May 28, her 192nd day in the hospital.

“Saying is not adequate. We feel instead. The lives of two families are forever changed. We are so grateful. There are no words — not for us or them,” Kathleen posted on the Yagos’ family blog shortly after the transplant.

“I think of the donor family often. . . . I hope they at least get maybe a little solace in knowing their child’s heart is beating inside of Hana and has given her life and freedom and independence.”

Since the transplant surgery nearly 8 weeks ago, the Yagos have been busy in the business of recovery. But they are also making up for lost time and enjoying their re-found freedom of being untethered from the hospital.

Hana, earlier this year, connected to the Berlin Heart (left), and Hana, more recently, after her heart transplant, enjoying a day at the beach (right)

“Now, Hana is talking, growing and moving a mile a minute,” said Kathleen as we walked out of the hospital on a sunshine-filled afternoon. “We are enjoying the beautiful weather and spending time outdoors, which she had such limited access to as an inpatient.”

The Yagos are residing at the newly expanded Ronald McDonald House at Stanford while Hana recovers. They have weekly appointments in the Heart Center and with various specialists for physical and feeding therapies. They avoid crowded places, as Hana is taking immune-suppressing medication while her body adapts to her new heart, but they’ve made some special trips to the beach, the redwoods and even briefly to their home, which Kathleen wasn’t sure Hana would remember.

“It was incredible, Hana knew exactly where she was (while visiting home) and kept saying ‘HAPPY, HAPPY, HAPPY!’ ” Kathleen recalled.

Post-heart transplant concerns that are relatively common are high blood pressure, reduced immune system and proper nutrition and physical therapy. Hana’s care team monitors her closely, but overall, “she is doing wonderfully,” said Seth Hollander, MD, pediatric cardiologist.

Although there have been some bumps along the way and a new world of medications to learn about, parents Paul and Kathleen are getting familiar with the feeling of exhaling again.

“It’s hard to describe . . . We went through so much over the past 18 months, not knowing what would happen,” said Kathleen. “Now it’s time to recalibrate and feel confident in her future and a happy, healthy childhood — our new normal.”