Spring has sprung, so for most people, the winter holiday season is a distant memory. But for one Minnesota family, this past Christmas is one that they’ll never forget.
As she opened her presents, Bianca Gozola was able to forget, at least for a little while, all that she’s been through.
"We were playing outside with neighbors who were a little bit older, but generally, you know, other small children," remembers Laura Gozola, Bianca's mom. "And I kind of looked around, and everybody was bundled up the same — hats, mittens, coats, whatever. But her lips were blue. And I was like, 'You guys see this, right? Like, why is she blue and nobody else is?'"
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Laura says subsequent visits to the pediatrician and a heart specialist revealed that Bianca had restrictive cardiomyopathy. That's where the heart’s pumping ability is limited because the muscle doesn’t relax normally. Bianca would need a heart transplant. Laura and her husband, Nick, were, as they put it, now "heart parents," starting what they knew could be a long journey. For two years, life was as normal as it could be with a daughter who needed a new heart. But it was early in 2022 that the journey takes a precipitous turn.
"We're both just like, 'It's just a cough.' Little did we know it was a heart failure cough. That's the cough that is a very obvious sign to those who know that that's actually your heart failing," says Laura.
It was at that point that the Gozolas were referred to Mayo Clinic and Dr. Rebecca Ameduri, a pediatric cardiologist. It's also where their journey takes a detour.
“So sometimes with restrictive cardiomyopathy, the pressures in the lungs get very high, something called pulmonary hypertension. And because the heart is stiff and doesn't relax, normally, you kind of get a backup of pressure into the lungs, and you get this pulmonary hypertension. And because of how high her pressures were and how severe it was, we couldn't go straight to heart transplantation," explains Dr. Ameduri.
Bianca was admitted to the hospital that day. Dr. Ameduri and the team at Mayo began working to get Bianca's pressures down. Laura says it became clear one day just how dire the situation was when she was called to Bianca's room.
"There was probably — I don't even know — 25 people in her room … flurry of activity … crash cart was at the end of her bed. And they had paddled her once. And I had to watch her get paddled a second time. But then she was safe for another little bit," says Laura.
To help Bianca's heart function and lower her lung pressure, she was connected to a biventricular assist device, or BIVAD. A BIVAD helps move blood through the heart. Slowly, surely, the efforts began to pay off. She was added to the transplant list. And in September, six months after being admitted, Bianca received a new heart. Then, just before Thanksgiving, Bianca was discharged. And for the first time in eight months, Bianca headed home … home for the holidays.
Laura says she and Nick had a hard time coming up with gift ideas for Christmas. "Because the things that we wanted couldn't be wrapped, you know, under the tree, but I think sitting there on Christmas morning with our kids opening presents the five of us at home. I think for us, that's really, the miracle of going home for Christmas. And being home was like, the first step towards the rest of our lives," she says.
The days and weeks since then have been filled with follow-up appointments. And while there are still challenges, Dr. Ameduri is optimistic about Bianca's future.
"When we transplant children that are her age, the average lifespan of that transplanted heart is about 20 years. However, the field of heart transplantation is only about 40 years old. So if we get 20 years out, who knows what we will have to offer her 20 years down the line," says Dr. Ameduri.
For Nick and Laura, this entire journey of being heart parents has given them a unique perspective.
"I mean, after going through what we've been through, we hear the tantrums and most parents, of course, that's, you know, nails on a chalkboard. But for us, it's like, listen to those healthy lungs, that she can do that because she couldn't for the longest time. She could barely talk. So having the lung capacity and the healthy lungs and a healthy heart — to be able to scream is amazing. It's a miracle in and of itself," says Laura.
April is Donate Life Month, a time to raise awareness about organ donation. Dr. Ameduri says there continues to be a shortage of donor organs. She encourages everyone to consider becoming an organ donor, to provide a miracle for someone like Bianca. Nick and Laura echo that sentiment and, someday, hope to meet the family of Bianca's donor heart.
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