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February 1, 2022 — February is the month to celebrate love and hearts. Since 1964, February has been known as American Heart Month throughout the United States. For the Siqueiros family of Peoria, Arizona, February truly is a month to celebrate selfless gifts from the heart. All three of their children (Isabel, Jason and Jaxon) are alive and able to celebrate Valentine’s Day this year because of the new hearts they have all received.
Isabel Siqueiros was born in 2016 to ecstatic first-time parents, Sara and Jason. They were thrilled and thankful to welcome this precious infant to their now family of three.
Their first two years at home with Isabel were like those experienced by other first-time, adoring parents. According to Sara, Isabel was an easy baby and they knew how incredibly blessed they were. But little did they know that when they took two-year-old Isabel to Phoenix Children’s Hospital for what they thought was pneumonia, their world would turn upside down.
On the very next morning after their pneumonia check at Phoenix Children’s, Sara and Jason were shocked to hear Isabel was in heart failure due to an extremely rare condition called Restrictive
Cardiomyopathy. This is a life-threatening condition that occurs when the heart’s ventricles are too stiff and cannot relax enough to fill with blood. The result is reduced blood flow in the heart that leads to heart failure, arrhythmias and fluid backups in other vital organs. They still remember the terror they felt when the medical team told them their beautiful toddler’s only chance of survival would be a heart transplant. Sara remembers, “Isabel spent 11 nights in Phoenix Children’s Cardiovascular Intensive Care Unit (CVICU) fighting for her life, but miraculously was able to return home with us.”
Back at home, Isabel had nine-week-old twin baby brothers who were being cared for by their grandmother while Sara and Jason were at Isabel’s intensive care hospital bedside for those 11 terrifying days. Once things started to return to ‘normal’ Sara and Jason took the twins, Jason and Jaxon, to be tested for Restrictive Cardiomyopathy. They were very relieved when they heard the news that the baby boys showed no signs of the condition. With a little less worry in their hearts, they took Isabel to her first outpatient appointment for an echocardiogram. The results were not what they wanted to hear — their precious little girl was not going to get better. Her team of specialists recommended getting her listed for a new heart as soon as possible.
Sara and Jason had experienced a whirlwind of emotions following Isabel’s heart failure diagnosis. They did, however, start to feel a small sense of relief when a transplant financial
coordinator introduced them to the Children’s Organ Transplant Association (COTA) and suggested they reach out to learn more about how COTA might be able to help with transplant-related expenses now and well into the future. Sara called COTA on March 1, 2018, and was able to quickly get answers to a series of necessary questions. She learned specifically how COTA could make things a little less stressful and started identifying a team of COTA volunteers. Sara hung up the phone confident COTA could definitely take away some of the family’s stress and anxiety. On March 6th, Sara and Jason returned the paperwork and officially became part of the COTA Family.
After numerous transplant evaluations, blood draws, meeting after meeting and numerous appointments, Isabel was listed for a new heart on March 15th. According to Sara, “The next few months were hard. My cell phone was permanently glued to my hand and I slept with it next to my head every night. My precious little girl’s health was rapidly declining and she refused to eat. She would only drink milk. Chewing became too much work for our sick, sweet girl.”
“When we found out we were going to be listed for transplant, we met with so many doctors and specialists at Phoenix Children’s Hospital,” Sara said. “Our financial coordinator and our transplant social worker both recommended we reach out to COTA because it was a ‘safe’ way to fundraise for transplant-related expenses. I remember being so overwhelmed with Isabel’s diagnosis that I simply completed and emailed the forms. COTA took care of absolutely everything else.”
The Children’s Organ Transplant Association (COTA) uniquely understands that family members who care for a child before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On May 14, 2018, a COTA fundraising specialist trained the COTA for Team Siqueiros volunteer team via telephone. The training call included detailed information about COTA’s fundraising strategies and step-by-step guidance for utilizing COTA’s online resources and no-cost website, which the volunteers and family would be given for fundraising and sharing Isabel’s transplant journey. This group of volunteers quickly started raising funds for COTA in honor of Team Siqueiros to help with mounting transplant-related expenses.
“Then on March 20th at 3:00 a.m., MY PHONE RANG,” Sara shouted. “I knew it was the transplant team since no one calls me at 3:00 a.m.”
Later that miraculous day, Isabel received her new heart … and her second chance at life. Isabel spent 12 nights recovering in the CVICU. Sara and Jason were thrilled, relieved and thankful to
bring her home on June 1, 2018, in the hopes the family of five would finally start to have a normal lifestyle. That was indeed to be the case for the next six months.
The Siqueiros twins, Jason and Jaxon, celebrated their first birthdays in early November 2018. It seemed to Sara and Jason the ‘normal’ life they had hoped for was coming to fruition. Isabel was doing great and the boys were a source of constant joy. But just two weeks after the first birthday celebrations, Jason suffered what would be the first of many cardiac arrests.
Sara remembers, “I was inpatient at Phoenix Children’s with Isabel for gastrointestinal issues she was having when I got a call from my mother at 1:00 a.m. She wanted me to know she had called the ambulance because Jason woke up screaming, was ghost white, throwing up and looked like he was going to pass out.”
The ambulance attendants who arrived at the Siqueiros home made the decision to take Jason to Thunderbird Hospital because it was closer than Phoenix Children’s. Sara ran out of Phoenix Children’s and drove the 20 minutes to get to Jason’s hospital bedside. “The second I saw his face, I knew something was terribly wrong,” Sara said.
Within two minutes of Sara’s arrival, Jason coded for the first time — his heart just stopped beating. So did Sara’s. Her breath was completely taken away. Sara stood outside Jason’s hospital room helplessly watching the medical team work to bring her baby boy back to life. They were able to regain a pulse and allowed Sara to console Jason. While in her arms, it happened again. Sara remembers the blaring sound of the code alarms going off all around her. Within minutes she was once again standing outside of Jason’s room helplessly watching the medical team. This time it was hard for the medical team to revive him and before Sara could process what was happening, she and Jason were loaded onto a medical helicopter and life-flighted to Phoenix Children’s Hospital. He coded, again, and the medical team rushed him into emergency pacemaker surgery.
“During all of this I was so worried about Jason’s twin brother, Jaxon,” Sara said. “Jaxon was brought to Phoenix Children’s, emergency tests were run and our worst fear came to life. Jaxon had Restrictive Cardiomyopathy, too.” To prevent a potential coding, the medical team decided to place a pacemaker in Jaxon just as they had done a few days earlier to Jason.
Jaxon spent 11 days in the CVICU and Jason spent 22 days there. According to Sara, the best Christmas gift was having all three kids home for Christmas that year. Both boys (and Isabel) did incredibly well through 2019; however, the boys were still being closely monitored by their transplant team. The bottom line was both Jason and Jaxon were never going to get any better; they both needed heart transplants like their big sister. A plan was made to begin the evaluations and for both boys to be listed for transplant at the end of March 2020.
But COVID-19 hit. Since the boys were doing really well in March and due to the shutdowns and unknowns of a global pandemic, the decision was made to wait until June to determine next steps. But on June 3, 2020, Jason suffered the most serious cardiac arrest of his life and was in Ventricular fibrillation (V-fib) for 40 minutes. This time the family was at home. This time Sara had to start CPR herself and had to continue it until an ambulance could arrive. This time, however, Sara could not travel with him due to COVID-19 restrictions. They followed in the car and arrived just in time to watch many doctors working on the fragile toddler lying on the table trying to regain the tiniest, weakest pulse. They succeeded and he was airlifted to Phoenix Children’s while Sarah and Jason followed in their car. When they arrived at Phoenix Children’s the family’s transplant coordinator met them and let them know little Jason had a pulse, but he was really sick. According to Sara, “She basically told us to prepare for the worst without saying those exact words.”
The days that followed were harrowing for the Siqueiros family. On June 9, 2020, Jason was listed for a heart transplant and on June 30th, according to Sara, an absolute miracle happened. A donor heart was found for their very sick little boy. They were able to take Jason home 10 days after receiving his new heart … and a second chance at life.
“Once we were home with Jason and he was getting stronger, I started to notice Jaxon was showing symptoms like Isabel did several years earlier,” Sara said. “Jaxon stopped eating. He stopped running around, and he stopped being my happy-go-lucky little guy. I once again found myself sleeping with my cell phone, helplessly waiting for the call that new heart #3 had been found.”
On September 22, 2020, that call came and Jaxon received his new heart and a second chance at life. Three kids. Three hearts. Three ‘lifetimes’ of transplant-related expenses.
Throughout the challenges of COVID-19, wondering when ‘the calls’ would come, sleeping with a cell phone, caring for post-transplant children while tending to the needs of very sick little ones … a bright, shining light for this family was the Children’s Organ Transplant Association (COTA).
“With COTA’s help, expertise and resources, our amazing team of volunteers has been able to raise more than $30,000 in honor of our three heart warriors,” Sara said. “But more importantly,
COTA has given us peace of mind that as our children continue on their transplant journeys, COTA funds are available for transplant-related expenses.”
She continued, “Finding an organization like COTA that is dedicated to transplant families’ financial and emotional needs has been a huge blessing. Being part of the COTA Family means we are not alone when we celebrate victories and when we face post-transplant challenges with each of the three kids.”
Today, Team Siqueiros is doing well and hanging tough. Sara reports that all three kids are thriving. This family of five is now at home embracing their ‘normal,’ which includes medical appointments, post-transplant medications, lab work, various therapy appointments … all times three.
Isabel will be celebrating her four-year transplantiversary this year. She is currently rejection free and doing well. Jaxon is also rejection free and is enjoying fewer medical appointments now that he is a year out from his transplant. Jason is currently at 1R for rejection, which is the closest level to a zero. Jason has completely bounced back from his setbacks after several cardiac arrests. Sara said, “They are all just enjoying being kids and being out of the hospital and not being plugged into multiple machines.”
“Transplant is not a cure,” Sara said. “It provides a much better quality of life, but requires costly medications, treatment and monitoring. We simply feel secure knowing COTA exists to help families like our navigate transplant journeys … for a lifetime.”
This Valentine’s Day, Isabel, Jason and Jaxon will likely be doing their favorite things, which include for Isabel playing with unicorns, mermaids and Princess Peach. And for Jason and Jaxon, Power Rangers, Marvel Superheroes, Mario and Luigi and Ninja Turtles. All three will be running, laughing, making funny faces and simply being adorable. The Siqueiros family will be remembering their three heart donor angels with love.
Happy Valentine’s Day Team Siqueiros from your COTA Family!
