Home is Where the Heart Is (Or, Where You Get A New One)
Through it all – the stress, the exhaustion, the worry, the fear — it’s the word that comes most to mind for Annie Lucero. Unbreakable, because in the midst of their shattered dreams for their baby, there was hope.
They’ve had to bend, but they’re not broken. But their precious little boy’s heart was. And that’s where their story began.
A Fighting Chance
“It’s his heart.”
“Everything just kind of stopped,” said Annie’s husband, Brian, an IT professional for the City of Yuma. During the 18-week anatomy scan, all indications pointed to Hypoplastic Left Heart Syndrome. It’s a birth defect that causes severe underdevelopment of the heart’s left ventricle, the side that delivers blood to the body. One in every one hundred infants is born with a congenital heart disease, often diagnosed during pregnancy.
The couple dived into research and learned everything they could before heading to the Heart Center at Phoenix Children’s. It is the State’s only institution dedicated solely to children, and home to one of the nation’s most respected pediatric cardiac programs.
“There are three standard options; first is comfort care, allowing nature to take its course. The second involves a series of three operations to repair the heart, knowing that at some point, transplant is necessary. And third, begin the process of transplant right away,” Annie shares. These days, medical jargon now rolls out effortlessly as ordering from a familiar menu.
Fueled by their unwavering faith, the couple decided to give John a fighting chance. Considering that immediate transplant wasn’t ideal for a newborn, the Luceros decide to give their baby a fighting chance by pursuing the surgeries.
“We decided to find out his gender and name him, so everyone knew exactly who they were praying for,” Annie shared.
Then, a month earlier than expected, the night after Christmas, Annie’s water broke. “We literally sat down to talk about slowing down, and Annie couldn’t stand up,” Brian remembers. Her water had broken, and they made their way out of town to deliver John near Phoenix Children’s.
A Home Away from Home
The first thing you notice about John isn’t the tiny helmet he’s wearing, or the glasses that help him to see. Or even the tangle of tubing that flanks his thick body.
It’s his smile. His contentment. And how other than those visible markers, he looks chubby and healthy. But without a doubt, he is a very sick little boy who needs a brand new heart. Now.
After John’s initial surgery just 8 days after his birth, he stayed at the Cardiovascular Intensive Care Unit (CVICU) for two months. Then, he developed serious complications. The couple weighed every option; the team of experts at the Heart Center consulted with pediatric institutions across the world. Together with John and Annie, the team decided that instead of undergoing a second surgery, a heart transplant was John’s best chance at survival. He was placed on the transplant list on November 14th, 2018.
John happily soaks up the faces of those peering into his crib – the tiny area he’s called home for a year. On his first birthday, December 27th, he is still fed intravenously; the shape of his head still filling out after the 2 months he spent flat on his back after his first surgery while machines helped him breathe. On the day of his first birthday party, he can sit up in his high chair while Annie works with him diligently to stimulate his mind with puzzles, books and soothing words. She listens intently during the doctor’s rounds; she seamlessly talks with nurses as if she is one of them. And here, in a way, she is.
“Thirty to 40 years ago, babies born with Hypoplastic Left Heart Syndrome didn’t make it,” explains Joshua Koch, MD, Division Chief of the Cardiovascular Intensive Care Unit (CVICU) at Phoenix Children’s. “Today many of these babies are living into adulthood, going to school and living active lives. But John has the most complex case I have ever taken care of,” he said. “He smiles, plays and interacts, but on the inside, he’s barely making it.”
It hasn’t been easy, they say, but they’ve made it work. Brian juggles working remotely and caring for Elliot. The Ronald McDonald house on campus at Phoenix Children’s has been their home away from home; and they trade nights sleeping right beside John’s bed. “We don’t want him to struggle or cough alone,” Annie says.
Their neighbors there, parents also juggling long-term illnesses, along with the doctors, nurses, child life specialists and volunteers have all become their family.
The Luceros are grateful, too, they say, that they were able to find the best care for John right here in Arizona. “We’re all together, and our family and support system is right here.”
But John’s situation is dire, he shares. “Now he has to be sedated, and a machine does a lot of the work for him to breathe; otherwise he wouldn’t be a candidate for a heart transplant,” he explains.
“We never know how long it will take before a heart becomes available; but he doesn’t have much more time to wait.”
The Little EnJOHN who …
And so, they waited.
And wait for the call that will finally reveal the news they’ve been praying for that a heart has become available for John.
“It’s hard, because I know our blessing will be someone else’s tragedy. And yet, we know this is John’s only shot,” Annie says.
On the day of his 1st Birthday party, the waiting is on hold for a day. The venue for his special day might be a makeshift room at the Hospital, with a frosty cake he can’t eat, but still, John’s face lights up.
Annie holds up her phone so John can see his favorite person on earth via Facetime, his big brother, Elliot. At Phoenix Children’s, everything stops for these important moments when a family just needs to feel like any other family, celebrating a milestone.
Except they know this could be one of many. Or, it could be the final one.
“We knew the first year would be hard; but I’m just so proud of him. He’s dealt with more in his first year of life than I have in my entire life,” says his mom, beaming. Even on days when we know he’s struggling, he’s working hard to turn over. He’s a fighter.”
That tenacity inspired the theme of his Birthday party: The Little EnJohn Who Could. As the toy train whirred under the Christmas tree in the family waiting room, his adoring parents, aunt, uncles and grandparents took it all in, and savored it.
Annie stops for a moment and says, “Our story is going to be called, ‘The Little EnJohn who did.’”
And she was right.
On February 20th, Annie sprang out of bed. It was 4 am, and she knew a call at that hour only meant one thing.
“We have a heart for John.”
She was elated. But she also felt a bittersweet tug on her own heart. “I sat down and I started to write a letter to the family who donated the heart,” she says. One day, they hope to meet the family who gave John the gift of life.
In the days and weeks following surgery, there were ups and downs and slight setbacks. “For the first several days, we had two nurses that were constantly busy. He kept running fevers, and we were always watching and wondering what was normal.”
But John stayed strong. He continued to grow, and his new heart proved to be a match. It will continue to grow with him, and he’ll have to come back for continuous monitoring.
And then, the day finally came. On May 8th, Brian and Annie packed up to head back to Yuma. Big brother Elliot was so excited. “I get to see my new giant room!” Annie looks forward to finally getting some space after spending so much time in cramped quarters.
But it’s a bittersweet goodbye. “It’s hard to put into words what this place means to us. If it weren’t for the doctors and nurses, our son wouldn’t be here.”
And they turned to take the “little EnJOHN who did,” home.