Feb 6, 2024, 11:07:02 AM CST Feb 6, 2024, 3:17:32 PM CST

A new heart restores Carlos’ playful spirit

Transplant patient Carlos and his family find expert care and support at The Heart Center at Children’s Health.

Young boy with glasses smiling. Young boy with glasses smiling.

In the summer of 2020, Carlos received the gift of a lifetime – a new heart. Karla and her husband Johnny are still in awe of what happened that day, just three months after they brought their 3-year-old son Carlos to Children's Health℠.

"I still remember getting the call from Dr. Baez Hernandez who said, ‘Johnathan, it is with great pleasure that I tell you, we have a heart for Carlos.' It was just a wave of emotions," Johnny says.

Now 7, Carlos still has regular visits with Nathanya Baez Hernandez, M.D., Pediatric Heart Transplant Cardiologist at Children's Health and Assistant Professor at UT Southwestern, the doctor who kept the family's hope and faith strong.

Little boy flexing his muscles.Besides a scar, there's not much about Carlos that would hint at his history. He's constantly running, jumping and swinging from anything that will hold him – which sometimes drives his 13-year-old sister a bit crazy.

"Unless you've been through this, it's hard to explain how meaningful it is to see your child play and have his health. It's because everyone at Children's Health – the nurses and care coordinators and all the doctors in the operating room – cared for him so much," Karla says.

Carlos is one of hundreds of kids living the life his parents dreamed for him after a heart transplant, thanks to the team at The Heart Center.

A big diagnosis for a little boy

Before his heart transplant, Carlos was a little boy who quickly made friends wherever he went and charmed everyone who crossed his path.

But around the time he was testing his speed on the playground, a heart condition was starting to slow him down.

"Sometimes, he would tell us he was having trouble breathing. We knew he had low iron, so our pediatrician had us change his diet, but it didn't help," Karla says. "Then he started to get really skinny. So skinny, when we got to Children's Medical Center Dallas, I lifted his shirt to show the nurse why I was so worried."

That same day, Karla met Dr. Baez Hernadez, who would become the doctor the family leaned on more than anyone else throughout their journey.

Little boy in hospital bed.An echocardiogram gave Dr. Baez Hernandez a clear picture of Carlos' condition. Unfortunately, he had a rare condition called restrictive cardiomyopathy – which happens when ventricles in the heart stiffen, restricting its ability to expand and fill with blood between beats.

"Given the constellation of his symptoms, we knew we had to move quickly through the transplant evaluation process to get him on the list," Dr. Baez Hernandez says.

At the same time, Karla started realizing that a diagnosis was just the beginning of Carlos' health journey.

“When Dr. Baez Hernandez saw how overwhelmed I was, she took my hand and started speaking in Spanish. She told me that she was fully confident that, with a new heart, Carlos would be okay,” Karla says.

Within two weeks, Karla and Johnny were moving their son into the hospital.

"We were at an appointment for a CT scan and the results showed his heart was so sick they told us he couldn't go home. He was getting sicker very quickly," Karla remembers.

Carlos' family joins The Heart Center family

On the eighth floor of the hospital, Carlos and his parents met the nurses and specialists who were trained to understand Carlos' exact needs and keep him as healthy as possible. Karla and Johnny also met parents of other kids who understood the same constant competition of emotions they were feeling – overwhelming love, fear and vulnerability.

The Heart Center is among the largest pediatric heart transplant programs in the U.S., and has the ability to treat children with complex conditions. But before Dr. Baez Hernadez and Ryan Davies, M.D., Pediatric Cardiothoracic Surgeon at Children's Health and Associate Professor at UT Southwestern, could give Carlos the heart he needed, they would spend weeks preparing.

Group photo of women and little boy.Transplant families also go through training to make sure they are ready to care for their child after they leave and are as prepared as possible for the many scenarios that may happen. A social worker solely dedicated to The Heart Center families helps them move through this process.

As the weeks passed, Carlos handled all the change fairly well. And like so many transplant parents, Karla and Johnny dug deep within themselves to never show Carlos anything but optimism.

"There are a lot of meetings about your child and what the doctors are going to do and how to keep him healthy enough to get a transplant. Dr. Davies always said, ‘When we get a heart for Carlos, he's going to be the kid you remember,' and I am so thankful for that confidence," Karla says.

Putting the transplant plan into action

When the call came, Johnny and Karla let joy and hope beat out all other emotions. The family spent the hours with Carlos before the transplant like any other day – showing him love and keeping his spirits up.

Karla held her son as he got the first dose of anesthesia that made him dizzy and act a little goofy.

"When they took him away, I said to the doctors – just bring my baby back. As the doors closed, we heard the doctors and nurses start to sing Happy Birthday to Carlos. Because he was going to be reborn that day," Karla remembers. "Hearing them sing to him is one of the greatest moments of my life."

Karla and Johnny received constant updates from the care coordinator about exactly what was happening in the operating room. The updates they were getting followed the exact plan they'd been hearing about for months.

Finally, Dr. Baez Hernandez and Dr. Davies walked through the doors of the waiting room. Because Carlos' transplant was in the summer of 2020, the couple couldn't have any family with them. And they couldn't see anything but the doctors' eyes. But they knew – Carlos had a new heart.

"Their eyes said everything. I could tell how happy they were, big smiles under their masks," Karla says. "When they told us his new heart was beating inside him without any help, I couldn't find any words but thank you. Over and over, I just said thank you."

Gratitude for the universal symbol of love and life

Little boy and woman flexing their muscles.When the family reunited, they settled in to watch their boy slowly wake up. Every time a machine would beep, Karla says she'd look to a nurse who would come over and assure her that he was doing great.

After a week in the cardiac intensive care unit, Carlos was moved to the regular inpatient unit to finish his recovery and start his rehabilitation.

"As soon as he could sit up, the rehab team had to start working to slow him down. I told them, ‘This is who Carlos is – we can't take our eyes off him for a minute!' He was back and that was the best problem to have," Karla says.

But the eighth-floor team wasn't ready to say goodbye to Carlos. Everyone the family met during their time with The Heart Center care team came to visit him.

"A few days before his surgery, I asked a nurse how she managed to do this job and stay so strong," Karla says. "When she came to see Carlos, she pulled me aside and finally gave me an answer – visiting kids like Carlos after their surgery is how they all stayed strong."

Family photo of little boy and parents.While Carlos recovered, Karla and Johnny continued to lean on Dr. Baez Hernandez and learn everything they could about caring for him when he was ready to come home. He would take more than 30 pills a day. He would have multiple hospital visits a week during those first couple of months. But it would eventually slow to weekly visits.

They also started slowing down to process everything they'd been through.

"I struggled a lot with feeling okay about being happy," Karla says. "For my son to live, it meant another child lost their life and this was my greatest fear. My son got to live because another family decided to be generous during their time of loss. Even before the surgery, that thought kept coming to me."

Well before the call came for Carlos' new heart, Karla and Johnny had decided that their family would protect and love this gift every day. This new heart would become part of their family.

To honor their new family member, they planted a peach tree in their backyard. It gives them fruit in the summer, which is when they celebrate Carlos' heart birthday.

Little boy kicking the soccer ballCarlos is now charming his first-grade teacher and proudly shows his scar to anyone who has a question about his transplant. He also has a whole community of friends whose families have also received compassionate care from The Heart Center team.

"The families of the other transplant kids are so special to us. We are connected by transplant experience and by this place. The Heart Center feels like a second home to all of us. We're all grateful to everyone for giving our children their life back."

Learn more

The nationally renowned team of pediatric cardiologists and subspecialists at The Heart Center at Children's Health treat the whole spectrum of pediatric heart problems, with a commitment to excellence. Learn more about our programs and treatments.

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patient story, heart, heart transplant, cardiology, transplant, surgery

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