Feb 11, 2019, 9:54:12 AM CST Feb 12, 2019, 9:23:01 AM CST

A family takes heart in their darkest days

Born with a heart defect that required a heart transplant, Olivia received the care she needed at Children's Health

Share:
Olivia and her mother Olivia and her mother

Like many new parents, when Miguel and Jacqueline were expecting, they dreamt about their child's future. Their hopes and aspirations grew as they prepared to welcome a new life into the world – and on February 22, 2018, their baby girl, Olivia, was born.

Almost immediately, it was clear that something was wrong.

An echocardiogram revealed that Olivia had an abnormality in her heart, and at 3 days old, she was diagnosed with a congenital heart defect called aortic valve stenosis. Doctors let Miguel and Jacqueline know that Olivia would need urgent intervention to survive.

"Realizing that a life's worth of planning could be gone in an instant was one of the most harrowing experiences, and really, a set of our darkest days," says Miguel.

Olivia had a balloon valvuloplasty, a cardiac catheterization procedure to repair her heart valve, but during the procedure, she went into cardiac arrest. After more than 60 minutes of CPR, Olivia was placed on extracorporeal membrane oxygenation (ECMO), a heart and lung bypass machine.

With Olivia's future uncertain, physicians recommended she be transferred to the Heart Center at Children's Health℠.

Finding hope at Children's Health

When the family arrived at Children's Medical Center Dallas, they met Robert Jaquiss, M.D., Division Director of Pediatric and Congenital Cardiothoracic Surgery and Professor at UT Southwestern. He had convened a team of surgeons and experts to discuss Olivia's case, and recommended a potential solution: a high-risk surgery called the Ross-Konno procedure.

"Olivia's abnormal heart valve was leaking severely, and though the ECMO support was keeping her alive, the ongoing valve leakage was damaging to her already injured heart," says Dr. Jaquiss. "The Ross-Konno operation, if successful, would stop the valve leakage. Her heart might then recover sufficiently, and if not, then at least she would be in a better state to explore other options."

"We knew we had a limited amount of options to save Olivia's life," says Miguel. "After a lot of consultation and prayer, we realized that this was our best shot."

On March 6, 11-day-old Olivia underwent the 10-hour open heart surgery. Slowly but surely, she showed signs of recovery. Two weeks after surgery, Olivia was successfully removed from ECMO, and Jaqueline was able to hold her baby girl for the first time since she was 2 days old.

Just a couple weeks later, Olivia was ready to move out of the Cardiac Intensive Care Unit (CICU), and Miguel and Jacqueline started to plan for her to come home. But before that happened, Olivia's condition declined significantly indicating that the hoped-for recovery of heart function was not going to occur.

Back in the CICU, it was clear that Olivia would need a new heart.

"Despite all the amazing efforts from Olivia's surgeons and physicians, we realized we were down to one option and that was pediatric heart transplant," says Miguel. "We just weren't sure how long we'd have to wait."

A new heart beats strong

While life in the CICU was a rollercoaster, Miguel and Jacqueline say they felt supported each and every day.

"Olivia's care team was amazing," says Jacqueline. "They helped us focus on the joys in the present, rather than get caught up in the fear of the future." One nurse, Kelsey, encouraged Jacqueline to find a unique way to participate in her daughter's care: Every day, she picked out a new blanket and matching bow for Olivia. "It became one of the things I looked forward to the most," Jacqueline says.

"It's the little things, like helping choose a blanket and bow for their child, that helps create some sort of ‘normalcy' for parents while their baby is in the ICU," says Kelsey. "Part of caring for Olivia was making sure that Miguel and Jacqueline were taking care of themselves, too."

Beyond finding emotional support, the family also had access to the experts and multidisciplinary care that Olivia needed. During her early ordeals, Olivia had also experienced strokes and seizures. Miguel and Jacqueline worked with teams across Children's Health, including neurology and gastroenterology, to help their daughter heal and stay strong enough for a transplant.

Then, on May 21, Miguel and Jacqueline got the news that a heart was available for Olivia – news, they say, that carried a lot of emotion.

"Finding out that information is not just an amazing experience, but also a humbling one," says Miguel. "You recognize in that instant that some other family had to make a selfless decision – and because of that selfless act, they were able to breathe life into our baby."

Dr. Jaquiss performed Olivia's heart transplant, and at 12:07 a.m. on her 3-month birthday, Olivia's new heart began to beat.

Elevating Olivia's story to help others

A month later, Miguel and Jacqueline were finally able to bring their baby girl home. Olivia requires medications, feedings and care nearly non-stop, and her parents say it was a challenge to figure out their new normal. But knowing that they could again dream about Olivia's future – and experience the most basic joys of parenthood – keeps them going and grateful.

"I was so excited for her to see her room for the first time," says Jacqueline. "Just sitting in the rocking chair, singing to her, reading her books, having her fall asleep on my chest – these are the things I love the most."

Olivia continues to visit Children's Health frequently for a variety of follow-up appointments and therapy. From the front desk staff to the surgeons and intensivists, Miguel and Jacqueline say they've received the best possible care.

"Every single one of these people has become family," says Miguel. "Without them, I'm not sure how we would have made it, but because of them, we now have the opportunity to share our story, and in some form and fashion, to give back."

The family, who documented their #LivStrong experience using social media, has found another way to raise awareness of congenital heart defects and organ donation. They wrote a book, Olivia's New Heart, to help explain the heart transplant process to children. Proceeds from the book will benefit the Heart Center to help support other families going through the same journey.

"When we take Olivia out in her stroller or to the park, people see her and they can't imagine all she's gone through," says Miguel. "I think that's a direct testament to the work that is being done at Children's Health – that they can take a child that is literally a heartbeat away from death and turn that into a lifelong set of heartbeats that will sustain her for hopefully a very long time."

Learn more

The Heart Center at Children's Health celebrates 30 years of transforming lives through cardiac transplantation. The nationally renowned team treats the whole spectrum of heart problems, with a commitment to excellence. Learn more about heart program and services.

Learn more about Olivia's New Heart and order your copy here.

Sign up

Stay current on the health and wellness information that makes a difference to you and your family. Sign up for the Children's Health newsletter and have more expert tips and insights sent directly to your inbox.

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

Childrens Health