As Laura glanced at her phone, it started ringing… It was their doctor’s personal cell phone. “We just accepted a heart for Bianca.”
The call ended a three-year journey for Bianca…and started the rest of her life.
Life was relatively normal for 18-month-old Bianca. She could play with her friends for hours on end. But when she would play outside in the snow, her cheeks, lips, hands, and toes would be bluish purple. Nick, Bianca’s dad, said, “That’s different.”
Laura, Bianca’s mom, started working through the possibilities with their pediatrician. When no other diagnosis was apparent, he referred the family for an echocardiogram—a test to take pictures of her heart. Nick and Laura assumed it was to confirm that nothing was wrong.
They were not prepared for what would happen next.
Bianca was immediately diagnosed with restrictive cardiomyopathy, a very serious and super rare condition in which the ventricles of the heart do not relax as they should. It forces the atrium to balloon up and compensate for the ventricles.
The diagnosis was both obvious and discouraging.
“There’s no quick or easy solution; there’s no known cure, there’s no surgery to fix it,” said Nick. “She needed a heart transplant.”
“Even doctors who are experts in hearts are not familiar with her condition,” Laura said. “That is how rare it is.”
“She won the bad lottery,” said Nick.
For the next two years, Nick and Laura lived on pins and needles, waiting for a life-threatening problem or a life-saving phone call. Despite continuously flowing medication and wearing a peripherally inserted central catheter line, Bianca continued to march to her own beat. She was mostly your typical busy, joyful toddler…but she was on borrowed time.
Just over two years after her initial diagnosis, Bianca developed a significant cough. Nick and Laura noticed she had been more sick, more often, so a cold was not a surprise. They lost count of how many times she had bronchiolitis or pneumonia. Laura made an appointment with her pediatrician…in hopes to confirm, once again, that nothing major was wrong. They were instantly referred to Mayo, and seen the following day.
And once again, they were not prepared for what happened next.
Bianca was in danger, and her safety was precarious. “We were mad, scared, frustrated,” said Laura. “We knew it could happen, but we weren’t ready.”
Mayo allowed a one-night stop home to pack clothes and other essentials, and for Bianca to say goodbye to her sister and brother. Nick and Laura didn’t know when—or if—Bianca would see her siblings again. The next morning, she was admitted to the Pediatric Intensive Care Unit at Mayo Clinic.
After she received her first heart catheter, doctors realized how serious it was. Her heart was so weak, she was put on life support and had a left ventricle assist device surgically implanted. Three days later, she coded, and they surgically implanted a right ventricle assist device with the oxygenator to exchange oxygen and carbon dioxide in her blood. She had a blood clot in the left ventricle chamber of her heart.
Nothing was functioning correctly, or going well for Bianca.
“We did not know how she was going to handle the surgeries or whether or not she would survive,” Laura said. “It was terrifying in all the worst ways you could imagine.”
After her first of three initial open-heart surgeries, she was moved to the Cardiovascular Intensive Care Unit for closer monitoring. But the move meant less rest and less resources for recuperation. Nick and Laura needed a home base: “a place to get away, sleep, recharge, collect ourselves…so we are ready to do it all again the next day.”
“You never think you will be the person who needs help,” said Nick. “The Ronald McDonald House is a great place for other people, but not for you. But it was exactly what we needed.”
Nick and Laura had a general understanding of the House, but they did not know about all the support and services. A room for sleep, spaces for recharge, family activities, snacks, and meals; “it was all essential and it helped us function.”
“Every second, every minute focused on other things—like food or finances—was a second or minute away from Bianca,” said Laura. “The House took care of our needs, so we didn’t have to worry about anything but her.”
“That is what the House provides.”
“Life as a medical family is different,” said Nick. “It is hard to explain, but the House is more than a building…it is a judgement free community with unwavering support. People going through the same or similar thing you are going through, and they truly get it, when nobody else does.”
Despite the relief they found at the Ronald McDonald House, the stress and anxiety was very real. A couple of months later, as Bianca recovered from her open-heart surgeries, she was finally healthy enough and was re-listed for a heart transplant.
But nearly 30 percent of cardiac pediatric patients die waiting.
“Waiting was very hard,” Laura said. “And we only waited an additional four months.”
After a summer together in Rochester, Nick and Laura prepared for another school year away from their other kids, waiting for a call.
They did not wait long.
“Initially, we believed every call would be the call,” Nick said. “But it didn’t happen, and it didn’t happen, and it didn’t happen.”
“Until it did.”
“I could not breathe,” said Laura. “Really—the perfect heart for my little girl?”
“Is this real life?”
Nick was nervous about accepting a heart; a successful transplant is a once-in-a-lifetime opportunity. But the doctor assured him it was not only a heart, but it was the heart for Bianca.
“That was enough for me,” said Nick.
Once the transplant team accepts a heart, everything and everyone is a whirlwind. Bianca was tested and prepped from top to bottom and whisked away for surgery. Laura and Nick waited once again…but their wait—their entire wait—was almost over.
“Bianca received such an incredible gift,” Nick said.
“We already experienced the traumatic; it was time for the excitement,” Laura said.
Following a successful September surgery and initial rehabilitation, Nick and Laura finally introduced Bianca to the Ronald McDonald House in November.
And on a snowy day in January, after 282 nights at the House…they were going home.
The first year after a transplant is the most critical, because the immune system is suppressed. But it is slowly building, and Bianca is slowly growing. Doctors expect she will march to her own beat for a full and complete life.
“We have so much hope,” said Nick.
Nick and Laura said their long and winding journey would not have been possible without the Ronald McDonald House. As he walked the halls and looked at the names of donors, he said, “people will never fully realize what their gift does for families—what it did for our family.”
“I wish I could write them all a letter and say thanks.”
Volunteers make the House a home for children and families from all over the world. Aside from keeping it safe and welcoming, Laura said the volunteers “truly knew my children and my family.”
“They are joyful hearts and are calming in a very chaotic situation.”
Bianca is home again with her sister and brother, though she will need regular appointments with her heart team. But as she played at the train table, she said, “Can we come back? I love the Ronald McDonald House.”
Help keep families like Bianca’s together during difficult times!