Change of Heart

They thought they were done raising kids. Then they met the little girl with a too-big heart.

BY September 30, 2019
Get involved: Meet Zara and her family at the Southwest Florida Heart Ball on March 28, 2020 or donate to the American Heart Association at . Learn more about Morning Star Foundation—completely funded by donations—and Meredith’s work by following her Instagram feed@meredithtoering. Photo by Scott McIntyre

They still have it, a picture of the text that changed everything. Twelve words. Four hearts. Two question marks. 

Would your parents adopt a little girl who needs a heart transplant??

It came the day before Thanksgiving. John and Kelly DeAngelis were peeling potatoes in their Naples kitchen. Their three grown kids had come home for the holiday, Maddie back from her first semester at college. They were putting up the Christmas tree. 

Maddie handed her parents her phone so they could read this text from a friend in China. It had a picture of a wide-eyed, 8-month-old girl in pajamas covered with penguins. Her name was Josie.

She has endocardial fibroelastosis… so it’s guaranteed she’ll need a heart transplant. This goes on to cause cardiomyopathy which can’t be fixed surgically. 

I’m really worried she’s going to be so hard to match. A heart transplant is such a big deal.

Endocardial fibroelastosis. Cardiomyopathy. The terms might as well have been Mandarin. But three words were clear: Heart transplant. Guaranteed. 

John and Kelly looked over at Jade, the sweet girl they had adopted from China two years ealier. Now 5, Jade needed a little sister. The paperwork was filed and they were waiting for a match. 

Jade had been a special-needs baby: bacterial meningitis at 3 days old. Treated at the orphanage in China, she had made a full recovery. John and Kelly were open to other special needs. They had gone down the list, checking boxes next to conditions they would accept. Birth marks. A cleft palate. Developmental delays. 

Photo by Scott McIntyre

A heart transplant? John and Kelly glanced at each other and laughed. The answer was quick and sure: No way. 

The text was from Meredith Toering, a 23-year-old friend of Maddie’s. They had met near the end of Maddie’s first semester. It was a trying time. The only school that had accepted her was 760 miles from her family. Maddie sat in her dorm room and cried a lot, wondering why friends with lesser grades got into schools closer to home. 

John told his daughter what he believed: Maddie, God has you at this school for a reason. You may not know soon. You may not ever know. But I think something awesome is going to happen here. 

Then Maddie met Meredith. They knew each other from Instagram because (among other things) they both had little sisters adopted from China. Before graduating, Meredith had lived in Maddie’s dorm. One day Meredith knocked on Maddie’s door and introduced herself. Ten days later, Meredith moved to China. 

Meredith had taken a job at Morning Star Foundation, a nonprofit foster home for Chinese orphans with complex heart defects. She spent her days dashing between hospitals and a house in a Beijing suburb, a home for babies with broken hearts. She called it the Little House of Brave. Most babies would need one to three separate heart surgeries. Before watching them wheeled into the operating room, she would hold them in her arms and whisper hopeful things. Some days they never came back.

No one knew better than Meredith the gravity of what she was asking. During a college internship in China, she had fallen in love with Brooke, a baby with hypoplastic left heart syndrome. Translation: Half a heart. Meredith had begged her parents to adopt. That baby was now Meredith’s sister (the second adopted from China). After three heart surgeries, Brooke was 9 years old and thriving. But one day, doctors said, she would need a new heart.

On a trip to Beijing before taking the job with Morning Star, Meredith had met a 3-month-old girl who was wary of strangers but endearingly sassy. Her birth name was Xiao Ran. The orphanage gave her a western name: Josie.

That Christmas, after Meredith’s text, the DeAngelis family decided to donate to Morning Star instead of buying gifts. Meredith sent photos of “her” babies, and Maddie arranged them in a giant collage. One of the babies was Josie. 

After Christmas, the collage went in the laundry room. Whenever Kelly walked by it, Josie’s eyes caught hers. “Are you my daughter?” she’d say.

Suddenly Josies were popping up everywhere. A long-lost colleague. An interior designer. While thumbing a text to his wife, John saw his phone autocorrect “Kelly” to “Josie.” Maybe it was coincidence. But to John and Kelly, it was a sign.

John wrestled with the feelings that pulled deep in his heart. One day, while sweating on the elliptical machine, he found himself arguing with God. John had plenty of reasons—very logical reasons—why adopting an infant with a broken heart was a terrible idea. He and Kelly were too old to go back to diapers. It wouldn’t be fair to Jade. Or their grandkids. What if they felt called to full-time ministry? How could they go when they needed to live within two hours of a heart transplant hospital? God, why would you ever ask me to do this?

Photo by Scott McIntyre

That’s when he heard an answer. Articulate, clear as a bell, it rang out not in his head but his heart. He stepped off the machine, pulse racing, tears forming, and typed the words into his phone. He didn’t dare to forget them:  

This is not about what I’m doing through you. It’s what I’m doing in you. You, too, need a heart transplant, as do many whom her life will touch.

John rushed through the house to find his wife. Their exchange was quick and sure:

What is God saying to you about Josie?

Kelly: What is he saying to you?

John: I asked you first. 

Kelly: I think she is our daughter. 

It wasn’t really their choice to make. And there was peace in that. But they were human, too. And their next thought was: Oh no! 

Photo by Scott McIntyre

The notion of adoption had first surfaced years ago on a family mission trip to Cambodia, where they’d met hundreds of kids without families, kids who put a human face on a cold statistic: the world has more than 100 million orphans. John and Kelly thought: We’d take one in a heartbeat if we could.

Five years later, at a Steven Curtis Chapman concert, someone handed them a pamphlet about sponsoring an orphan. They already sponsored several. Kelly turned to John and surprised herself with the words that spilled out: “Why don’t we just adopt?”

It didn’t make sense. They had three great kids. Maddie, the baby, was 15. And life was plenty busy. The co-founder of DeAngelis Diamond Construction, John runs the national firm, which builds hospitals, banks and resorts. Kelly was growing into the role of grandmother.

And yet they couldn’t shake the calling. There was room in their lives for one more child. They wouldn’t run out of love. If an orphan appeared on their doorstep, they would never turn her away. That night they went home and prayed. Those prayers had led them to Jade.

Now, two years later, they prayed again—this time about a baby with a heart defect. At 2 months old, she had been left across the street from some hospital in China. Someone found her in a basket, wrapped in a blanket, with money tucked into the folds. 

Photo by Scott McIntyre

Five months after Meredith’s text, John, Kelly, and Maddie sat in a government building in Beijing. They joined 11 other families awaiting the vans that pulled up, one by one, from different orphanages. In the adoption world, this is called Gotcha Day. Josie’s van was one of the last to arrive. 

The handoff went as many handoffs do: Josie squalled and squirmed in the arms of strangers. Who could blame her? Her new family didn’t look, talk, or smell like anyone from the Little House of Brave. John, Kelly, and Maddie took her back to the hotel and played with her on the bed. They gave her a new name: Zara. 

Zara came home to Florida on a Friday. On Tuesday, doctors at Joe DiMaggio’s Children’s Hospital reviewed her medical records from China. They looked at bottles of medicine with Chinese labels translated into hand-written English. An expert studied Zara’s echocardiogram, an ultrasound picture of her heart. John and Kelly braced for the prognosis.

“Your daughter doesn’t have cardiomyopathy,” the doctor said. “The condition she has is correctable.”

Photo by Scott McIntyre

The American doctors said Zara didn’t have what the Chinese doctors thought she had. She had ALCAPA, which would require surgery but not necessarily a new heart. ALCAPA stands for anomalous left coronary artery to the pulmonary artery. Translation: the plumbing of her heart was a mess. The blood vessel that feeds the left ventricle—the chamber that pumps blood to the rest of the body—was attached in the wrong spot. Her heart was being fed the used-up, oxygen-depleted blood that should have been routed back to the lungs. It was starving. To compensate, Zara’s heart had grown four times the size of a normal child’s heart. 

The good news: Zara might not need a heart transplant. The bad: She needed open-heart surgery—now. Without surgical intervention, 85 percent of babies with ALCAPA die within their first year. Most have surgery in their first 30 days. Zara was 13 months. Surgeons would have to re-plumb her heart.

Eight days after landing in Florida, Kelly and John dressed Zara in bunny pajamas and drove her to the hospital. They prayed over her and whispered, “We love you to infinity!” As the anesthesia mask was placed over her pacifier, they held her tiny hands until they went limp.

Hours later, Zara emerged with an angry red scar from sternum to belly. She was tethered to nine machines, sprouting so many tubes and wires that she looked like a marionette. Even on pain meds, she flailed and cried ferociously; the doctors marveled at her strength. The breathing tube they thought she would need for days came out within hours. They realized, then, that Zara’s heart was not only big, but persistent. 

In the days that followed, the family roller-coastered between hope and complications. The doctors warned they might have to go back in and do a “revision.” Instead, they did an angioplasty to open up an artery. A day later, Zara caught the flu. Four days after heart surgery, she flashed her first post-op smile, sat up, babbled, and played. On the seventh day, she went home.

Zara’s scar began to heal into a tender exclamation mark, a dot where a tube came out of her belly beneath the large incision. Seven weeks after surgery, she was cleared to go on vacation with her family in Maryland. Meredith, visiting from China, joined them at the lake house for the Fourth of July. She wrapped her arms around the child who used to call her “Momma.” 

Four days later, Zara was sleeping too much, eating too little, grunting and crying more than usual. In the emergency room, she was sweating profusely—a symptom of heart failure. The family considered having her airlifted home to Florida. But a storm was brewing. So an ambulance sped her to Children’s Hospital in Pittsburgh. Her coronary artery was collapsing. Her mitral valve needed repair. She was rushed into open-heart surgery. Again.

In the waiting room, minutes felt like years. They waited, suspended in a timeless haze of hope and fear and faith. Things could go wrong, that much they knew. But they trusted the hand that wrote the plan that brought Zara into their lives. They leaned on their faith and each other. Both held. On the threshold between life and afterlife, they encountered “a peace that surpasses understanding.”

After five hours, the surgeon came out. The procedure went well, but Zara’s heart was swollen. He wanted to leave her chest open for a day or two—just in case. Her heart was so big it  collapsed one lung and pushed other organs out of place. Her mitral valve still wasn’t working. There was talk of another heart surgery—maybe now, maybe years from now. 

After they closed her up, before they removed the tubes, Zara opened her eyes and scanned the room. Her right hand reached out and grasped John’s pinkie finger. His heart began to swell. 

It’s been four years since her second heart surgery and Zara hasn’t needed a third. She likes to remind doctors—and everyone else—who’s really the boss. She loves salami and chicken nuggets and ramen noodles. When she’s happy, her sentences run together: I-love-you-you’re-my-best-friend-you’re-pretty! Her favorite toy is a doctor’s kit, which she uses on her family. It always goes something like this:

Zara: Ok, tell me you’re sick.

Maddie: I have a sore throat.

No, you have a tummy ache. Can you eat?

Maddie: Yes, I can eat.

Zara: No. You have to say you can’t eat.

Thanks to surgery and treatment, Zara’s heart has gone down in size. It’s now only 20 percent bigger than normal. But its capacity for love has grown. Running through the house in pajamas (she calls them jamamas), she’ll pause and say something like this:   

Zara: Hey.

Maddie: Hey.

Zara: I love you.

Maddie: I love you, too.

Zara:I love you so much… I can’t handle   it!

Now five, Zara is a spokesperson for the American Heart Association, who chose her as one of their “Heart Heroes.” She can stand in front of a room full of grown-ups and captivate them with her smile. 

Photo by Scott McIntyre

Doctors say that one day she’ll need a new mitral valve. The big question is when. Too soon, and she might outgrow it and need another surgery. Too late, and her heart could decline from the wear. Researchers are working on a valve that could expand with a growing child’s heart. To support their work, John and Kelly signed up to chair the AHA’s Heart Ball, a fundraiser in Fort Myers, next spring.  Maddie decided to become a cardiac nurse. 

 “Our ultimate goal is for her to live out her whole life with her birth heart,” Maddie says.  

How realistic is that?

“Anything is possible,” says Dr. Maryanne Chrisant, Zara’s cardiologist. “I think they have a good hope.” 

Photo by Scott McIntyre

Hope. It is the secret chord that plays every day in the Little House of Brave, where the cycle of heartbreak and hope repeats. Meredith traces her finger down each tiny scarred chest. She has shepherded more than 150 babies into heart surgery. Even on days that leave her arms empty, hope never runs dry. What else could there be for these little hearts, so broken, and yet still beating?

“It’s never not worth it to hope,” Meredith says on the phone from China. “Every single hour that was spent, every dime, was worth it. Hope was still given and fought for and chosen.” 

It turns out that hope is contagious. It spreads story by story, rippling across oceans, defying odds and logic and time. John and Kelly chose hope over reason, believing a little girl’s heart could be restored. In the process, so were their own.  

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