Meet Elizabeth: a 110-day battle for life, hope

Born with a group of birth defects undetected in utero, Elizabeth wasn’t getting better and running out of options when her family called Children’s Health.

When Hayden called Children’s Health, his newborn daughter, Elizabeth, already had undergone two surgeries to correct birth defects that were undetected in utero. She was septic and on a high frequency oscillating ventilator – a last line of defense to help her breathe.  

And Hayden and his wife, Kaitlyn, were desperate.  

The attending physician at the hospital where Elizabeth was born warned she was not healthy enough to be transported to another facility. But their little girl also wasn’t getting better – and she was running out of options.  

“I was on the phone with Dr. Yallapragada, the medical director of the NICU at Children’s Health. Dr. Yallapragada asked me to take her off speakerphone and read Elli’s ventilator settings back to her one more time,” Hayden said. “I’ll never forget it, once I finished reading them, she said, ‘We can take her.’”  

Hayden and Kaitlyn felt hopeful, but they also were scared. They had to weigh conflicting advice from medical professionals, and the future of their baby daughter – a person they were just getting to know.  

“Elli had lots of things that she needed help with, and she needed lots of specialists. She didn't need just a cardiologist or just a pulmonologist or just a gastroenterologist. She needed all three of them to be in the room at the same time,” Hayden said. “We didn’t know Children’s Health, but we knew it could offer more.”  

The couple decided to take the leap and move Elizabeth – at 19 days old – in the middle of the night to Children’s Medical Center Dallas.  

“When the transport team walked in, my mom likes to joke that it looked like the Dallas Cowboys offensive line had entered the scene,” Hayden said. “They spent hours moving her to the gurney, and then we quietly left.”  

An up and down journey and a moment of connection 

Elizabeth was born with a group of birth defects that impacted her heart, spine and esophagus. Only 12 hours after she was born, she had her first surgery to repair a hole in her stomach. A few days later, once she was stronger, she had another surgery to close a hole in her esophagus. 

When she arrived around midnight at the Dallas campus, the transport team rushed her through the double doors where a swarm of physicians, nurses and technicians were ready to move her into the NICU.  

And Sushmita G. Yallapragada, M.D., a hopeful voice they’d only heard on the phone, was there to greet them, too. She knew from Elizabeth’s vital numbers that this baby still had fight left.  

“I feel a lot of empathy for these families no matter what the diagnosis is. It is really hard to be in a hospital. It's hard when everybody around you and all your family and friends have had a different experience, and you're experiencing this very acute period,” said Dr. Yallapragada, Medical Director of the NICU at Children’s Health and Associate Professor at UT Southwestern Medical Center. “It feels isolating. It feels scary, and it feels insurmountable. And I felt it in their voices when they called.” 

At first, Elizabeth seemed to be doing better in the NICU, but by day five, her condition took a sharp decline.  

As a last resort, physicians advised putting Elizabeth on a heart and lung bypass machine called extracorporeal membrane oxygenation (ECMO) -- a life support system for critically ill children who have life-threatening heart or lung problems. 

“Neither one of us knew what that was, and so it was scary,” Kaitlyn said. “But we knew that was the only thing we could do to save her life.” 

The machine gave her body time to rest, and at about six weeks old, Elizabeth was strong enough to move to the cardiovascular intensive care unit, where Hayden and Kaitlyn were able to hold her for the first time.  

“That part makes me super emotional, because up until this point, we had been unable to do anything that a parent typically does. The most we could do was change her diaper,” Kaitlyn said. “We finally got to have that connection with her. And then after that, they let us do it every day.”  

The mother-child bond and ability for a family to hold their baby is stressed as part of a patient’s recovery through The Heart Center’s neurodevelopment program – the only cardiac program of its kind in North Texas, said Erin Gordon, D.O., Critical Care Specialist at Children’s Health and Associate Professor at UT Southwestern Medical Center.  

“Elizabeth is part of their family. We could manage her medical care, but the aspect her parents really needed to know that Elizabeth was going to be OK was the physical and emotional interactions with her,” Dr. Gordon said. “Donations allow us to offer these resources and contribute to this bigger work, additional programs and research to give our patients the best outcomes.”  

The ride home 

Two months after she was born, Elizabeth was strong enough to undergo open heart surgery to repair the holes in heart and fix her pulmonary artery. 

“We thought that that was going to get her off the ventilator pretty quickly, but it just took a while,” Kaitlyn said. “Her lungs were really ill.”  

But what seemed like a setback, her medical team saw as an opportunity to improve the way her body functions so that she would be successful the next time she tried.  

“We meet them during their probably most vulnerable timeframe because they're sick. They're in the hospital. They're not making the progress they were supposed to be making,” said Abhay Divekar, M.D., pediatric cardiologist at Children’s Health and professor at UT Southwestern Medical Center. “And then we're trying to explain to them what we're going to do in a language that is not too medical.”  

Toward the end of Elizabeth’s stay, Dr. Divekar performed one final procedure to place a stent and widen an artery in Elizabeth’s heart. 

And finally, at 110 days old, Elizabeth was ready to go home.  

“All that I had wanted to do was wheel her out in her stroller like every other mom. That day, when I finally got the chance to do that, was surreal,” Kaitlyn said.  

Looking forward and giving back 

A chatty 2-year-old, Elizabeth has lots of stuffed animals (also known as her babies). She’s picking up on sarcasm, dancing to the “Hokey Pokey” and making herself laugh. (For example, she’ll shorten the names of her stuffies such as a lobster named “Lobby” to “Lob” and crack herself up.)  

“We say that she has the joy of the Lord, and we truly believe that. She had a crazy rough start and somehow has just been happy the whole time,” Kaitlyn said.  

In January, Dr. Divekar performed another procedure to widen the stent in Elizabeth’s heart. The hope is that she won’t need another operation for several more years.  

“To me that is the best part of the job. Obviously, none of us can predict the future, but we see how she is today – a kid who is running, playing and laughing,” Dr. Divekar said.   

And now, Kaitlyn and Hayden and their extended family are focused on giving back. Kaitlyn is a member of the Women’s Auxiliary to Children’s Medical Center, volunteering her time to host fundraising events that benefit Children’s Health.  

The family wants to dedicate their time to show their gratitude for the team who cared for Elizabeth, and they want their daughter to learn how to be thankful as well.  

“I still get the feeling, when I drive over the hill, and you can see the hospital and you can see the Children’s Health sign and the red balloon,” Kaitlyn said. “Early every morning, I would be driving here if we didn't stay the night. But now, I have her in the backseat talking away. And it's cool because we never knew if we were going to have that, but because of Children's Health, we do.” 

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