Olivia

A Child Whose Quality of Life Was Restored by a Heart Center Team with an Eye Beyond Her Transplant  

Olivia, 5, is proud of her most recent accomplishment: going all the way across the monkey bars hand-over-hand without any help. A curious, kind-hearted child with an adventurous streak, she’s like many little girls her age who love princesses, the movie Frozen and LOL mini dolls. Yet there’s one big thing that sets her apart from her peers and that’s her hero, baby angel Killian. The reason, she says, “is because he gave me his heart.” 

In 2023, Olivia celebrated the 5-year anniversary of her transplant conducted at The Heart Center at Children’s Health in Dallas — the place she calls the balloon hospital. It’s also the place where cardiac neurodevelopmental specialists on Olivia’s care team made sure that the damage done by a congenital abnormality in her heart didn’t cause permanent damage to her brain. 

A newborn’s dire circumstances 

Two days after Olivia’s birth, her parents were caught completely off guard when she was diagnosed with aortic valve stenosis at the hospital where she was born.  

The condition is characterized by a narrowing of the valve in the aorta — the body’s main artery that branches off the heart. This narrowing keeps the aorta from opening fully, reducing blood flow to the body and making the heart work harder.  

In addition, only one of the aorta’s three leaflets — flaps that prevent blood from seeping back into the heart — was working. 

By the time Olivia was transferred to Children’s Health on her one-week birthday, she had already survived cardiac arrest, a full hour of chest compressions to resuscitate her, tubes implanted in her neck so she could be hooked up to a life-support machine, and a brain bleed.  

Her case was so complex and had become so dire, a group of 40 Children’s Health and UT Southwestern surgeons convened to talk about next steps and possibilities. They decided to try an extremely high-risk valve replacement — a last-chance effort to save Olivia’s heart before she would need a donor heart. 
 
During her recovery from surgery, just as she was being taken off the life support machine and having her chest closed, she suffered three strokes that sent blood clots to her brain. 

In the end, the valve replacement would not be viable long term, so Olivia was placed on the transplant wait list for a new heart. 

And if news of a heart transplant wasn’t distressing enough, her parents, Jacqueline and Miguel, were told their daughter likely would grow up with weakness on one side of her body, vision problems and cognitive delays.  

Mitigating developmental challenges

Dr. Corinne Anton, Olivia’s pediatric neuropsychologist, said that infants like Olivia who have undergone heart surgery are at a higher risk of having developmental challenges like learning differences, language and motor delays, and attention difficulties. 

“Olivia also suffered neurological insults to her brain, including strokes, seizures and blood clots,” she explained. “These events can rob an infant’s brain of oxygen — and may affect their quality of life for the long term.”  

Dr. Anton directs The Heart Center’s Cardiac Neurodevelopmental Program, the only program of its kind in north Texas. The program’s goal is simple: to improve kids’ success in life after heart surgery so they’ll be able to fulfill their dreams and goals.  

For Olivia, the inpatient neurodevelopmental team started feeding-therapy and infant-parent bonding activities right when she was admitted to The Heart Center.  

“The first three years of life are critical for brain development and overall functioning,” said Dr. Anton. “The earlier we start intervention services like helping a hospitalized baby who’s been tube fed learn to eat by mouth, the quicker the neural pathways in that child’s brain will remap to support the new behavior.” 

A family’s life-changing journey

Before Olivia received her donor heart in May 2018 on her 3-month birthday, her lead cardiologist gave Miguel and Jacqueline this advice: Let your daughter live her life and don’t hover every time she gets a runny nose.  

Though they do their best not to make Olivia feel different than other kids, they’re proud that their daughter’s journey has changed the trajectory of their own lives.   

Jacqueline, once a pediatrician, now works for the Southwest Transplant Alliance — Dallas area’s local organ procurement organization — managing a team that offers hope and meaning through organ donation to families losing a loved one. It’s the same organization that had once followed Olivia as a potential organ donor. 

In 2019, Miguel accepted an invitation to become a trustee on the Children’s Medical Center Foundation Board.  

“When we were in the hospital and my daughter was sleeping, I used to pray that she would wake up,” he said. “That memory is a constant reminder that philanthropy helped fund the research and expert clinical care that made my prayers come true.” 

Miguel went on to say that continued generosity from the community is key to helping more kids survive and thrive. “The power of giving helps children in desperate need today have access to the same intensive care that made Olivia’s life possible.” 

To give other families a kid-friendly resource to talk about transplants, Miguel and Jacqueline wrote a children’s book titled “Olivia’s New Heart.” All proceeds are donated to The Heart Center at Children’s Health. 

Overcoming all odds 

For the first four months of her life, Olivia was in a hospital bed connected by wires and tubes to machines that sustained her life, but also contributed to gross motor delays, feeding challenges and deficits in early language development. As soon as she was discharged, The Heart Center’s outpatient neurodevelopmental team jumped into action. 

“She had a lot of catching up to do,” Jacqueline explained. “Dr. Anton and her team were crucial in thinking through and monitoring the physical and occupational therapies that set Olivia up for success.”  

Today, Olivia is a kindergartener in a dual-language (English-Spanish) program who is right on track with her classmates. In addition to reading, she loves to paint, swim, dance and make new friends. And every 18 months, Dr. Anton assesses Olivia’s developmental milestones and shares new ways to support her progress — a process that Jacqueline said empowers her to be a better mother. 

For Miguel, Olivia is a direct testament to the life-saving care being provided at The Heart Center at Children's Health. “They took Olivia, a child that was literally a heartbeat away from death, and turned her weak heartbeat into a strong rhythm that will sustain her — and her dreams — for a very long time." 

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