During January, blood donations typically drop off due to holiday breaks from schools, inclement weather and winter illnesses. However, it is a month of great need for blood donations partially due to holiday-postponed surgeries and schedules that preclude donors from giving blood. Each day, the Red Cross must collect 13,000 pints of blood across the country to meet the needs of patients.
With grateful hearts, this and every January to come, a Children’s Organ Transplant Association (COTA) family in Minnesota will be forever grateful to the blood donors whose blood was used throughout their daughter’s transplant journey and her life-saving, and complicated, transplant.
Bianca Gozola was born in October 2018 to adoring parents, Laura and Nick. They had a toddler, Fiona, and were excited for the two sisters to meet. Once they got Bianca settled in at home, their hearts were full. With two beautiful and seemingly healthy daughters, they felt blessed.
Then about 16 months later, the family was playing outside on a chilly Minnesota day with other children and their parents. Laura remembers looking at Bianca and noticing that none of the other kids’ lips and fingers were blue/purple, like Bianca’s. Bianca had also been fighting a cold she could not shake. In addition, Bianca’s hands and feet always seemed to be cold and sometimes had a purple tint. They worked with the family’s pediatrician who eventually suggested Bianca undergo a heart test called an echocardiogram.
The echo immediately revealed devastating news — Bianca was diagnosed with Restrictive Cardiomyopathy on March 11, 2020. The upper chambers of her heart were about three times larger than normal, and her lower chambers were not relaxing enough to properly pump blood throughout her body. Bianca was in heart failure. There is no cure for Restrictive Cardiomyopathy, and there is no medicine or surgery that can fix it. The only option for long-term survival is a heart transplant.
On March 24, 2020, Laura sent a Get Started (COTAGetStarted.org) notification to the Children’s Organ Transplant Association’s headquarters requesting more information. That same day, COTA’s Family Outreach Specialist placed a call to Laura who said their transplant social worker suggested the organization might be able to help. Additionally, Laura followed COTA on Facebook and had been intrigued by the organization’s Challenge Grant incentives.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of volunteers who go through training with COTA staff. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
The Gozola family had family history with heart transplants, and so they wanted Bianca to be cared for by the heart team at Children’s Minnesota in Minneapolis (20 miles from their home), where Nick’s sister, Kristi, received her care. Unfortunately, the family’s insurance provider had denied that option and indicated Bianca’s eventual heart transplant would need to be performed at Mayo Clinic’s Transplant Center in Rochester (more than 80 miles from their home). COTA’s point person was able to assure Nick and Laura that these would be transplant-related costs for which COTA funds could be allocated. One week later, their signed agreement arrived at COTA’s headquarters … the Gozola family officially became part of the COTA Family and Bianca became a COTA Kid.
“Before Bianca’s transplant journey began, we had no idea who COTA was, or what they did,” Laura said. “We had no idea what her transplant timeline nor the financial hardship would be. Very quickly after our first call, Rick Lofgren, COTA’s President, reached out to talk to us. Even though we had just received devastating, life-changing news, we felt a sense of comfort talking with Rick. He explained very clearly and openly about the organization as a whole and specifically about their commitment to us and to Bianca.”
She continued, “The idea of working with such experienced professionals who have travelled the path we were about to walk with so many families and over many decades, gave us much-needed peace of mind as we were facing a future of unknowns.”
On April 30, 2020, COTA’s fundraising specialist trained several of the Gozola family’s friends who would be leading the fundraising effort for transplant-related expenses. The training was done via conference call due to COVID-19 restrictions. The group was excited to get started and discussed that they would plan virtual events like t-shirt sales and an online auction.
COTA provides all families with a no-cost website they can use to update friends and family members about their transplant journeys. The websites are also utilized by volunteer teams for fundraising. COTAforTeamBianca.com was created and began quickly attracting followers and financial supporters. Laura and Nick regularly posted updates, which kept everyone current on the twists and turns of Bianca’s complicated transplant journey.
On September 6th, Laura posted on the COTA-provided website: “Bianca had her checkup this week and all are thrilled with how well she is doing. She’s starting to eat better – she’s up to 23 pounds 12 ounces! A recent x-ray shows her lungs are clear, which means the pneumonia is gone after one round of antibiotics. Her doctor told us there was a heart available a few weeks ago, but there was another patient higher on the list than Bianca. He shared this to let us know that even though the pandemic is affecting the volume of available organs, they are becoming available. He checked the UNOS (United Network for Organ Sharing) list, and she is currently #8 in our region. Don’t get too excited. That does not mean she will get a heart soon. Pregnancy Update … I am now over 37 weeks pregnant with a baby boy! Our journey continues on this currently positive note.
On September 15th, Laura posted: “I am out of words to describe how this 2020 journey has been for our family. Trying to see the bright side in this recent twist. Bianca, as our followers know, has a PICC line in her right arm. Somehow, probably last week, she fractured her upper left arm.”
January 2021 Laura posted this update for the family’s growing list of supporters: “We are buying a pulse oximeter to have at home to tell us her heart rate and blood oxygen saturation levels. Our doctor wrote a prescription for it, but our insurance does not cover it. Thankfully, we have COTA! Even though it is not extremely expensive, everything just keeps adding up. This applies to the Boost Breeze nutritional juice drink we buy for Bianca. I just checked, and with the appropriate paperwork, COTA funds can be used for it, too. We have already spent $500 just on these drinks since July. We’re so thankful for COTA for Team Bianca!”
On March 14, 2021, Nick posted: “One year ago (technically yesterday) our seemingly carefree lives changed forever, and then changed again a day later. Bianca was diagnosed with Restrictive Cardiomyopathy and put on the transplant list, and the very next day COVID-19 was declared a global pandemic. There are some days I wake up and wonder if this is a bad dream. But it is not, this is real life … this is our life. We feel the love and appreciate each and every one of you. We don’t know when Bianca’s transplant will happen, but we know our community of support will be with us through it all.”
Being a COTA family became even more critical when, as previously noted, in 2021 Laura and Nick learned their insurance company denied preauthorization of Bianca’s heart transplant at Children’s Minnesota. It was now time to start the process of moving Bianca’s care to the Mayo Clinic Transplant Center in Rochester – 90 minutes from their home in Savage. After Bianca’s initial transfer and workup by the team at Mayo, the family started traveling to Rochester every couple of months for checkups.
On August 31st, Laura posted: “We cannot thank everyone enough for your support of COTA for Team Bianca. The Garage for a Cause proceeds brought the thermometer $10,000 closer to the goal, and we are overwhelmed with gratitude. Whether you donated, shopped, stopped by to say, ‘Hi,’ helped set up, clean up, shared a post on Facebook … we felt the love.”
On November 19th, Laura posted: “We were admitted to Children’s in Minneapolis last night because Bianca’s femur is broken. She has been in quite a bit of pain, but now that the orthopedic team has stabilized it, we are hopeful she will start healing and will be less on edge. While driving to Children’s we received the news that all five of us have tested positive for COVID-19.
Unfortunately, the family’s infrequent road trips to Rochester took a sharp turn in early 2022 when Bianca developed a terrible cough. Since her coughs had previously turned into pneumonia or bronchiolitis, Laura and Nick expected that outcome once again. After a couple of visits with their pediatrician, they travelled to Mayo for more testing. Laura remembers, “We got placed in our clinic room, and then her three main transplant doctors all came in … it was bad. We were not going home. We talked them into letting us go home for one more night as a family, before being admitted and not knowing when, or if, Bianca would see her siblings again.”
The next morning, they returned to Mayo and were admitted to the PICU. Bianca was prepped for her first heart catheterization procedure. The results confirmed their worst fears. Laura was cuddling a post-procedure, still-sedated Bianca and remembers her jaw dropping and the tears falling as the results were shared. Bianca’s heart was barely functioning, and she was rapidly declining. Her listing on the transplant registry was paused because she was too sick to accept a new heart. The medical team scheduled a care conference where two dozen doctors were in attendance to discuss how best, and most safely, to care for Bianca. Her case was rare and complex. Within days, Bianca was scheduled for her first of three open heart surgeries. On April 1, 2022, she was placed on a Left Ventricular Assist Device (LVAD) to do the work of the entire left side of her very tired heart.
“The surgery went well, and we were moved from the PICU to the Cardiac ICU floor, where unknown to us at the time, we would stay until November,” Laura said. “After a day or two we thought things were going okay so we decided to sleep across the street rather than in her hospital room. We were in the process of moving our things into a new hotel (the first one was not a good situation) when my phone rang. They needed us back immediately; Bianca was coding.”
Laura and Nick rushed back and were astonished and scared to see so many people packed into Bianca’s room. The doors were wide open, and the crash cart was at the end of her bed. Her transplant cardiologist and surgeon were at her bedside. She was in an arrythmia they could not stop; they needed to take her down for another surgery — this time to have the Right Ventricular Assist Device (RVAD) placed with an oxygenator. After the surgery, they were told her heart was flat as a pancake and the oxygenator, along with a ventilator, was now doing the work of her lungs as well. Both main organs, Bianca’s heart and her lungs, were not functioning. This surgery left a large blood clot in her left ventricle, and she was on blood thinners … but fortunately she never had a stroke.
On April 1st, Nick posted: “What a day. We were able to see her tonight and I’m still decompressing from what we saw. There are so many moving parts/pieces/tubes to this puzzle, and alarms and noises that the team stressed to us were all normal and expected. They are trying to get her heart and lungs back into shape to manage the long-term demand a new heart will require.”
On April 5th, Laura posted: “Bianca developed an arrhythmia today; they were able to shock her twice and use meds to get her back to normal rhythm, but she needs another surgery to go on full ECMO. That means she now has a machine doing the work entirely for her heart, and her lungs. It will be 24/48 hours before we know more. This was the worst day of our lives as parents.”
On April 11th, a positive update: “Nick and I are exhausted, but the bi-VAD is working great with minor daily adjustments they need to make for her to gain strength and pee off excess fluid. As Nick describes the past two weeks, we built a huge iceberg of stress and now it is beginning to melt away … even though it will never fully go away. We are still waking up in panic, but that is lessening, and sleep is becoming easier over time.”
“We had a phone call with COTA’s President and discussed overall fundraising goals given our new situation. We are, and have been, extremely blessed with the support – spiritually, emotionally and financially – from COTA. It was determined we need to increase the fundraising goal because we do not know what to expect in the upcoming months … and years.”
On April 21st, Laura posted: “Bianca has had a rough couple of days. Sleeping is better with Mom in the room … so guess where I’m typing this? She definitely needs to sleep more so I’m here at her bedside as much as possible. Nick and I are trying to figure out a routine. Our psychiatrist mentioned it’s common for parents to feel like fish out of water because we did not choose to be here. Nick is now on unpaid leave from his work until we can move home, and I am still on leave a little longer from my work … so our ‘work’ is managing Bianca and our family.
Bianca continued to exceed all expectations and after another heart catheterization procedure in late May, the oxygenator was removed and she was relisted for a new heart. Thus began their wait again. Bianca lived in the ICU. The focus was to rebuild/build up her strength which would help her body through the eventual transplant. She was eventually able to ride a specialty bike around the unit, had tons of smiles to share and watched many Disney princess movies. Laura and Nick took her outside the hospital’s walls to the hospital courtyard for the first time in June — it was also the first time she saw her brother, Devin, since March.
For Summer 2022, Nick and Laura rented a large, furnished home down the street from the transplant center. It was large enough for Big Sister Fiona and Little Brother Devin to live there, as well as the grandparents who had been providing their care. Their new routine included Nick being at the hospital with Bianca while Laura worked remotely at the rented house. Grandparents provided daycare for Fiona and Devin. Then at night, Nick and Laura switched and Laura went to the hospital after spending precious minutes with Fiona and Devin. According to Laura, “All of this was possible because of COTA’s support and the incredibly successful fundraising for COTA for Team Bianca. We were able to breathe easier and focus on our child and our family, thanks to COTA.”
On September 3rd, Laura posted: “Holiday weekends provide a higher chance we might get a heart. Knowing another family’s heart will be breaking while Bianca gets a new one is the hardest thing. We are not excited about going into another school season, separated, and still without a light at the end of the tunnel. It weighs so heavily on our shoulders. One hour at a time.”
At the start of the school year, the Gozolas moved back into the Ronald McDonald House. Grandma and Grandpa stayed with Bianca for several days while Nick and Laura, for the first time together, both went home to Savage on September 8th to see Fiona off to Kindergarten. On September 11, 2022, Laura was with Bianca and Fiona at the hospital while Nick was with Devin at the Ronald McDonald House. (Devin was not old enough to visit the hospital.) Laura’s phone rang. “I have some good news for you,” their transplant doctor began. “We just accepted a heart for Bianca.” Bianca’s perfect heart was on its way. Laura hugged both girls for what felt like a long time; they did not understand her happy tears. Laura called Nick and shared the news. A flurry of activity began to get Devin and Fiona back to Savage with Grandma and Grandpa and to prepare Bianca for her third open heart surgery and her new, perfect heart.
“We said goodbye to her as they took her away to the OR to prep her access lines and we went to dinner. We knew better than to go back to her (empty) room – that’s a big lesson learned from previous surgeries. We asked about timing, but the staff did not know specifics. We did not know if the heart would arrive by helicopter, ambulance or another vehicle. We stood outside and a passing security guard explained to us that sometimes organs are driven to the hospital from the local airport using a car service,” Laura said. “Not long afterwards … we saw it. A black SUV with multiple passengers wearing surgical scrubs pulled into the ambulance bay and just as the garage door closed, we saw the medical team exit the vehicle and pull a large container from the trunk. It had to be Bianca’s new heart.”
On September 13, 2022, Laura posted: “Bianca got a new heart yesterday. Bianca’s got another birthday to celebrate. We’re finally into the next phase of our journey!”
Thus started the next chapter in the Gozola family’s life. But Bianca’s road to recovery was not without bumps.
On October 3rd, Laura posted: “What a difference a day can make. She’s doing great! She had a few initial setbacks right after transplant, but over the past week she’s been shedding wires and tubes and getting off short-term medications and onto meds that are more likely going to remain when we go home. Late last week, Nick and I were sitting next to her when she called out, ‘Mommy, my machine is gone and no more tubes!’ Finally, over a week later, she was able to start to comprehend what had happened and how her life has changed. We can’t even imagine what her mind must be thinking. One of the ways we know she is improving overall is her sassiness, stubbornness & independence – all of which are really coming out now. I posted pictures on the COTA website recently and I was struck by a phrase in my head, ‘Some things break your heart, but fix your vision.’”
The week before Halloween, Bianca was discharged from the Cardiac ICU to a step-down unit, which meant Nick and Laura were officially in charge of her 24/7. And on November 7th, Bianca was released to the Ronald McDonald House with 18 medications, given six times throughout the day, four feedings through her NG tube, and daily vital checks. Nick said, “The first few days were a whirlwind, joyfully chasing Bianca around, getting used to her medication schedule, trying to get her to eat and learning what life was like as parents of a heart transplant child outside of the hospital.” Devin and Fiona came to join them the first weekend after her release. They had hoped Bianca would sleep in a bunk bed like Fiona, but unfortunately, she was too scared and needed Laura to sleep in the same bed. Laura said, “At every turn, we were so thankful to be challenged with things like figuring out sleeping arrangements, rather than what else could have been. Bianca was alive, thriving even, and we could not get enough.”
Thanksgiving 2022 was the family’s first full weekend together as a family. Everyone was healthy; they had an amazing five days. Great memories were created at the Ronald McDonald House — it felt normal, but almost surreal to Laura and Nick. In December, they were all allowed to return to their home in Savage for Christmas. “We received the biggest, most heartwarming gift that could never be wrapped; we were all able to be together in our own home for Christmas,” Laura said.
In early January 2023, Laura returned to working full-time while Devin went to daycare and Fiona went to kindergarten. Nick embraced his new role as stay-at-home Dad. The following week they were approved to switch to bi-weekly appointments for Bianca’s checkups, so the family officially moved out of the Ronald McDonald House where they had stayed for 282 nights.
On March 23, 2023, Laura posted: “A year ago today we made the trip to Mayo Clinic to have Bianca admitted. So many thoughts, feelings and memories come flooding through my brain. But most of all, we feel JOY. This past year has taught us, and shown us, so much about the human spirit. Thank you for your endless love and support as we rode the rollercoaster that was 2022 for Bianca. Please go outside, stand in the warmth of the sun’s glow and smile big because this day we celebrate life!
Today, Bianca continues to grow, develop and improve while navigating relatively minor bumps along the way. Her smile, spirit and spunk are back and better than ever. She adores anything Princess, baby dolls, the color pink, her play kitchen and her family. Bianca simply loves being home — and so do her parents. Their hearts also overflow with love and appreciation for their amazing team of COTA volunteers who raised nearly $135,000 for transplant-related expenses.
Laura and Nick know transplant is not a cure. It provides a much better quality of life, but requires costly medications, treatments and monitoring. COTA exists to help families, like the Gozolas, navigate their transplant journeys … for a lifetime.
“Through COTA’s fundraising guidance and expertise, our volunteers inspired our community to see how they could help with the costs associated with a transplant journey. The response was overwhelming, and it showed us just how much people cared,” Laura said. “It is hard to put into words how important it was to feel the love and support of our community throughout the COTA for Team Bianca fundraising effort. People simply wanted to help, and COTA made that possible in a very meaningful way. We will be forever grateful.”