After 2-year-old Mateo died from drowning, his donated organs saved other people’s lives. His family found solace in knowing that his liver went to an infant and his kidneys to two adults.
The heart, though, felt like the most powerful gift.
Because they can hear it, still.
It beats now in the chest of a little girl named Willow, who would have died without the gift she received because of another family’s tragedy. When the two families met a few months after Mateo’s death and Willow’s heart transplant, Mateo’s family took turns placing their ears to Willow’s chest, hearing the thump, thump, thump of their boy’s strong heart.
They held up a stethoscope attached to a phone so they could record the steady beat, and take it home with them.
A heart for Willow
Willow’s own heart had no beats left.
When the transplant team at Children’s Hospital Colorado removed the 2-year-old girl’s heart and set it on a table, it was done, too weak to squeeze out a few last beats as sometimes happens during transplant operations.
A new heart for Willow, a sweet-faced toddler and the only girl among five brothers, had come just in time.
The tranplant last August not only saved Willow’s life but let her live outside of a hospital bed, to play and run without the tubes that had attached her body to machines.
It came after multiple cardiac arrests, so many nights in hospital beds, a late-night false alarm about a donor heart that didn’t come, and her family’s move across the country on a “hope and a prayer” that doctors in Colorado would give Willow a new heart. The girl is home now in Castle Rock, one of more than 500 patients who’ve received heart transplants at Children’s, which has grown to one of the largest programs in the nation.
“This is actually the longest we’ve ever had her home,” said Willow’s mom, Lauren Sanford, as her girl ran around their back yard in a diaper, trying to keep up with her brothers. “She feels like she’s actually mine now.”
“There’s no hope here. Let’s go there.”
Willow was 5 months old the first time she was rushed to the hospital.
Sanford started driving toward the hospital when she realized her baby was turning blue. An ambulance met them about 30 minutes from their home in Maryland, then brought Willow to Children’s National Hospital in D.C.
“When they put her on the EKG machine, they were like, ‘We’ve never seen this before,’” Sanford said. “She had four arrhythmias that were life threatening.”
Willow’s heart was basically stuck in V-tach, or ventricular tachycardia, and her heart was racing. Medication didn’t work. Doctors in D.C. tried burning part of her heart with a catheter ablation in an attempt to get it to function properly. Then they implanted a pacemaker and a defibrillator into her body. Sanford watched helplessly, for the first time of many, as the machines tried shocking Willow’s heart back into rhythm.
After all of it, Willow’s baby heart was weak. Doctors found that she had a rare genetic mutation — she was only the 65th person to receive the diagnosis — that they suspect is linked to cardiomyopathy, which affects the heart’s ability to pump blood.
Willow’s parents wanted their baby to have a heart transplant, but doctors at National Children’s said she wasn’t a good candidate. Instead, they proposed trying to fix her heart valves through a surgery they admitted was risky. “I mean, you literally sign every time that she goes in that she could die, so we always know there is a risk,” Sanford said. “The procedure they wanted to do, they were just like, ‘The chances of her coming out aren’t great.’ And I’m like, ‘Why would we do that?’”
When the Washington hospital didn’t want to put Willow on the transplant list, her parents asked Boston Children’s. They said no, too. They went to Children’s Hospital of Philadelphia and got the same answer.
It felt like a “death sentence,” Sanford recalled.
Sanford didn’t stop, though. She contacted Texas Children’s in Houston and Children’s Colorado in Aurora.
Only Dr. Melanie Everitt, a pediatric cardiologist and director of the Children’s Colorado heart transplant program, said yes. Everitt agreed with Willow’s parents — the operation on the child’s valves wasn’t the best option. There was a good chance she would put Willow on the transplant list, pending more tests in Colorado.
“Well, we’re on our way,” Sanford recalled saying. “No other questions. There’s no hope here. Let’s go there.”
Willow and her mom were in Colorado within about three weeks of that conversation, flown from the children’s hospital in Washington to the one in Aurora. Sanford’s husband, Blake Stump, who is in the U.S. Air Force, immediately asked for a transfer, sold the family’s home in Maryland and began working at Buckley Space Force Base in Aurora.
Children’s does 20 heart transplants a year
Only the sickest of the sick among the heart patients at Children’s Colorado will get a transplant. That’s because there aren’t that many children’s hearts to offer as transplants for other children.
Children’s does 15-20 heart transplants each year, totaling almost 550 since the hospital’s heart transplant program began in the 1980s. It’s now among the top 5 nationally in terms of patient volume. The program requires a robust team, and every transplant requires two surgeons — one to remove the organ from the donor and fly with it back to Colorado, and another to place it in the child who needs it.
A transplanted heart must come from a child of similar age and size, and is usually the result of an accident or other sudden, tragic event. More parents than not whose children die are willing to donate their organs; it’s just that there are far more children in need of hearts than children who can give them, said Everitt, director of the heart transplant program.
“Most families would do it,” she said. “At any one time, we have about 20 patients waiting for transplants. If you had unlimited hearts, it’s quite possible that more children would be listed as well. Since you don’t, it really ends up being the sickest children who have no other option.”
This means the hospital’s doctors and nurses sometimes spend months or even years trying to keep a child with a defective heart alive on medications until they receive a transplant. Some kids die while they wait.
About half of children who receive heart transplants were born with a heart defect, while the other half developed conditions including cardiomyopathy, which is when the heart does not squeeze normally. In Willow’s case, her rare genetic abnormality was causing cardiomyopathy — the electricity that coursed through her heart, making its muscles squeeze, was disorganized, causing her heart to stop or beat so ineffectively that it was not supplying enough blood to her heart or body, Everitt said.
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After hearing from Willow’s family, a team at Children’s — which includes four transplant surgeons and specialists in metabolics and cardiac genetics — decided that a transplant would offer the best hope for Willow.
They got her on the transplant list within eight days of arriving at Children’s. But Willow did not receive a heart for another year and nine months, in part because she went on inactive status on the transplant list temporarily but mostly because it takes that long to find the right heart.
Willow waited in the hospital for months, growing so close to the nurses that her mom thought of them as “the aunties.” The long wait included one false alarm during which Sanford got a late-night call to pack a bag and get to the hospital. But tests right before going to the operating room revealed that Willow had an adenovirus, a common respiratory virus but one that has caused complications in prior transplants, and the operation was canceled.
The transplant team includes four surgeons because it takes two for every transplant, which could happen any day of the week, any time of night and involve traveling to any state where a donor heart is available. Transplant physicians have no medical decision-making or contact with the donor family while they are trying to decide whether to donate their child’s organs. This separation helps avoid conflict of interest, Everitt said.
“We like to recognize the gift of the donor family,” the doctor said. “None of these transplants could be possible without the donor organ.”
But the hospital can say little about the donor heart. The family whose child is receiving the organ gets almost no information about where the heart came from, she said.
“All we are able to tell families is that the heart is a good size and will work for their child,” she said. “There is a lot of trust.”
In Willow’s case, however, the mother of the boy who donated the heart sent Willow’s mom a letter.
A little boy’s heart beats in Willow, and his family could hear it
The toddlers were almost the same age, born just two days apart in April 2021.
Mateo’s mother, Jessica Gonzales, wrote a letter to Sanford and gave it to Children’s Hospital in September, about a month after her son’s death and Willow’s transplant.
In December, Sanford invited the New Mexico family to Colorado for a visit and they spent a couple of days together visiting the aquarium and a trampoline park. It had been four months since Mateo was found in the family’s pool. A family friend and emergency responders resuscitated him, but the toddler who loved spiderman and dinosaurs died about a week later, on Aug. 11, after doctors said his brain would never recover.
The pain was still so raw.
Sanford, still processing the trauma from the years of worrying her daughter would die, didn’t have it in her when the families met to ask what happened to Mateo. For Sanford, who can easily talk to other “heart mom friends” about their grief, the loss of the mother who gave her child a heart felt too uncomfortable.
“I’m really, unfortunately, quite comfortable with loss, but it was a different feeling, because he’s the reason that my child’s alive,” she said. “I don’t know if it was like survivor’s guilt or what, but it’s been more difficult because there’s a sudden, tragic thing. With heart moms, we all know that this might happen to us at some point, today or tomorrow or 10 years from now.”
Instead, the two moms watched their kids play, marveling at the similarities between their families. The Sanfords have six kids, while the Gonzales family had five. Mateo’s closest sibling, a 4-year-old sister, Mila, fell in love with Willow. Sanford recalls seeing moments of sadness cross the girl’s face, even as the kids played and jumped together.
“Her brother’s not here and he was like her best friend,” Sanford said. “Every once in a while, I would just look at her and I’m like, ‘She looks so sad.’”
Besides Willow, Mateo’s donated organs helped three others.
Offering them to people who needed them to survive was an easy decision, Jessica Gonzales said. “We knew without a doubt that it was his calling to continue to help others,” she said. “Although our hearts will never heal, we know he lives on and that gives our family strength to get through the hard days.”
Gonzales and her husband, who did their best to celebrate their daughter’s high school graduation this spring and keep showing up for their son’s baseball games, use a hashtag to honor Mateo on all of their social media posts about organ donation and life in general. #LiveLikeTe, they write, for the little boy with a “contagious laugh” and who was “full of love, joy and happiness.”
“His love for life and everyone around him made an impression on all those he met,” his mom told The Sun. “He smiled through his eyes, touching your soul.”
As Gonzales listened to Mateo’s heart beat in Willow, she felt a mix of emotions, including reassurance, she said. “God has a plan for all of us,” she said, “Mateo was fulfilling that plan.”
Her family was struck by the Biblical meanings of the names of the two toddlers. Willow means loss, hope and rebirth. “Although our family has experienced a great loss, Mateo has given four other families hope as he lives on,” Gonzales said. Mateo’s name means “gift of God,” and organ donation was “the ultimate gift” he could give, his mom said.
“Many of us won’t ever make that big of an impact in our entire life,” she said. “He is truly a hero, a legend, and the best guardian angel one can have.”
“I was blessed with so much time with her”
Willow isn’t a girly girl; she never learned to play with dolls. She got behind developmentally, her speech included, because she spent so much time in hospital beds. But the 3-year-old is catching up now, in order to play with her brothers.
Doctors have warned Willow’s family that she isn’t a candidate for another heart.
Her arteries would collapse, no longer strong enough to accept another line that delivers the lifelong medication that guards against organ rejection.
Her parents have somehow found a way not to dwell on this.
The heart Willow received at age 2 could last for maybe 20 years. “Generally, people as young as Willow would still need a heart transplant later in life,” Dr. Everitt said. “There are some infants living into their 20s before they need another one.”
But, with each decade, there are new developments in medication, so there is hope that Willow’s heart could live beyond what is expected today. The problem is that people who receive heart transplants must take medication to prevent rejection for the rest of their lives, but over time, immunosuppressive medicine causes other complications.
“A heart transplant is another kind of chronic illness,” Everitt said.
Willow’s parents feel like they’ve already spent enough time being sad. Sanford’s TikTok posts from the many months she spent bedside Willow’s hospital bed are depressing — she realizes that when she looks back at it now.
In the past few months since the transplant, though, they’ve committed to living in the moment.
“We are so thankful,” Sanford said. “We’ve gotten to watch Willow learn how to walk and how to talk, to hear her little voice. These are all things that if no one had intervened, we would have lost her at five months old. Even if something happened today or tomorrow, I know that I was blessed with so much time with her that I shouldn’t have had.”
For a while, Sanford let the fear take over. She wondered if her daughter, now 3, would make it another year, if she would make it to 15. “It ate me alive,” she said.
“I don’t want to sit here with the time that I do have left with her and miss it because I’m so depressed about what could happen and may never happen.”
So she will pray and hope for medical advances, that Willow’s gifted heart will last 30 years and that by then, there will be a way to give her another.
“But for now,” Sanford said, “we just enjoy the moments that we have.”