3 Toddler Siblings with Rare Heart Condition Receive Life-Saving Transplants
"I want them to grow up being thankful that their hearts beat for two and to never forget that," Sara Siqueiros tells PEOPLE of her daughter and twin sons
The parents of three children from Arizona are counting their blessings after the toddlers were all diagnosed with a rare heart condition that required them to undergo a life-saving transplant.
Sara Siqueiros tells PEOPLE that the last two years for her and her husband Jason Sr. have been a complete whirlwind ever since their kids — daughter Isabel, 4, and twin sons, Jaxon and Jason, 2 — were all diagnosed with restrictive cardiomyopathy.
The rare condition happens when the heart's ventricles stiffen, making it difficult to pump blood to the rest of the body and subsequently causing heart failure, according to the American Heart Association.
"When our daughter was first diagnosed, it was really, really rough, just accepting a new life and the fears and uncertainties of what was to come," Sara, 32, explains. "As everything progressed, and as our twins have now had to go through it, it obviously has gotten easier and a lot less scary."
Three successful heart transplants later, the kids now have a second chance at life — thanks to their organ donors and the medical team at Phoenix Children's Hospital.
Isabel was the first to undergo a heart transplant in May 2018, and her twin brothers followed with Jason getting the procedure this June and Jaxon in September.
"Phoenix Children's Hospital saved all my children and kept our lives as normal as possible," Sara says. "Every day I wake up now, I don't worry about what the future holds. I just focus on making that day the greatest day I can for myself and my babies. It just totally changes your outlook on life and what's truly important."
Leading up to the transplants, Sara says all three kids didn't show symptoms of restrictive cardiomyopathy until they were at least 1-years-old. With Isabel's case, it was a couple of weeks after her second birthday in January 2018.
"We thought she had pneumonia," Sara recalls. "A couple of days later, she started to get worse so we took her Phoenix Children's Hospital and they told us the next morning, when our world changed, that she had restrictive cardiomyopathy."
"There's really no other way to describe it than it feeling like someone completely ripped your heart out of your chest," she continues of the diagnosis. "You lose your breath, it's an out of body experience."
Though they were fearful, Sara and Jason Sr., 35, managed to get Isabel on the United Network for Organ Sharing (UNOS)'s list by March, and just two months later, the little girl received her heart transplant.
As for the boys, Sara says their situation was far more dramatic.
At the time their sister was diagnosed, Jaxon and Jason were just nine-months-old. Despite not showing any symptoms of the heart condition, their parents had them tested but nothing concerning showed up.
That all changed in November 2019, right after the twins' first birthday, when Jason suffered his first sudden cardiac arrest, according to Sara.
Over the next nine months, he would go on to suffer three more episodes — including his most severe one on June 3rd — while Jaxon was also confirmed to have a less-critical case of the condition.
"Jason coded a couple of times at the hospital," Sara explains. "The one time at home in June, I had to start CPR and call 911. I don't even know how I did it, but I'm glad I did because for 40 minutes he was in cardiac arrest and his heart was in defibrillation."
"We really didn't think he was gonna make it," she adds. "We didn't have a lot of hope, but he pulled through."
Even though learning the boys' diagnosis wasn't ideal, Sara says the news came as a relief to her and her husband.
"After going through a cardiac arrest and literally seeing your child lying there, not breathing, I think it was the least of our worries," she shares. "There are children and people every day that get these diagnoses and there's nothing they can do. Nobody wants a heart transplant but it's still a wonderful option."
Still, she admits, it's been difficult not getting specific answers due to the rarity of the kids' condition.
"Restrictive cardiomyopathy is a one-in-a-million condition," Sara explains. "Because it is so rare, they do not have any data on it. Obviously, the doctors think it has to be genetic, looking at all three children."
"We are basically writing this data for future kids," she adds. "I think that gave me a sense of relief, like, I might never know but hopefully one day, a mother in my position will because my kids help write this data."
In the wake of the children's transplants, Sara and Jason Sr. have attempted to contact Isabel's donor family to no avail. They are hoping to connect with Jason and Jaxon's donors once the six-month waiting period is up.
All three also have a "great possibility" of going through another transplant later in life due to the fact that hearts only last a certain period of time, Sara notes.
For now, with all her kids at home "running around", the mother of three says she is teaching them to embrace every moment and be thankful to those who gave them this chance.
"It is so easy to take every single day for granted," she shares. "I want them to grow up being thankful that their heart beats for two and never forget that. Always live up to your best potential for both of you."
For those considering being an organ donor, Sara has one message: "It's a very tough decision to make and nobody wants to have this conversation but when you're gone, you really don't need them anymore. It's not about thinking of it as, 'Oh, I'm giving away my organs.'"
"You're not giving away your organs. You're giving a child time to grow up, you're giving a mother a chance to be with her kids, a grandmother to see her grandchildren grow up," she adds through tears. "You're basically giving a family life out of your tragedy, and you can do something very, very beautiful."
For those interested in becoming an organ donor and giving the gift of life, visit Donate Life America.
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