Preston’s story: From lifesaving equipment to life as a typical 9-month-old

It was 3 a.m. and Preston needed a diaper change in the hospital. His parents, Trever and Ashley, watched his oxygen levels drop from an alarming 75% to 40% – and then to just 12%.

“Within minutes, what started as two nurses became what felt like the entire unit working to save our baby,” remembers Ashley.

Fast forward – 9 months later – and that same baby boy who Ashley described as “being more wires than baby” is home, laughing and playing with his toys like your average toddler.

“Preston is now thriving and delighting his big brother and sister with his contagious smile. It’s mind-blowing,” says Trever.

Learning their son had a rare heart abnormality

When Ashley was 22 weeks pregnant, she went in for a routine anatomy scan. She was then referred to a specialist – because something was wrong with her baby's heart.

Soon after, she met with Alan Sing, M.D., Pediatric Cardiologist and Medical Director of Pediatric Heart Specialists and Co-Director of Cardiology at Children’s Medical Center Plano/Northern Market. A fetal echocardiogram revealed that their baby had a rare and serious congenital heart condition called dysplastic tricuspid valve, which occurs when the tricuspid valve does not form or close properly.

Dr. Sing laid out the realities of their son’s condition, the need for the close monitoring during pregnancy, and the possible treatments after birth – including open heart surgery.

“Dr. Sing didn’t sugar coat things and took time to make sure we understood everything. He also really helped us not jump to conclusions,” says Ashley.

Dr. Sing believes one very important part of his job as a cardiologist is to teach.

“I treat my patients the same way I’d treat my own family,” says Dr. Sing. “I do everything I can to lay out the most accurate information as clearly as possible, including the risks and realities. When families say they felt prepared and nothing was a surprise, that tells me we did our job well.”

Feeling supported from their first appointment

Not long after, they met another vital member of their care team: Jennifer Baker, RN, Fetal Heart Care Coordinator. She helped them process everything Dr. Sing had shared and answered the questions swirling in their heads.

Over the next 3 months, Jennifer continued to provide invaluable support.

“I’m pretty sure Jennifer was able to provide Ashley more support than I was,” chuckles Trever.

Jennifer checked in via text nearly every day.

“She’d check to see how I was doing emotionally, to hear what the latest plan was, or to give me insurance updates,” she says. “I even remember getting a text from her on a Friday evening that said: ‘Hey, I know it’s the weekend. But if you need anything, text me.’”

Behind the scenes, Jennifer worked to get Ashley’s care and records transferred, resolve complex insurance issues and set up appointments with the other members of their care team.

In the face of a growing need for heart surgery

Ashley was able to carry Preston until 38.5 weeks, when an ultrasound revealed that he was no longer growing properly. The next day, Preston was delivered via C-section.

“He came out crying and weighing 6 pounds, 5 ounces, which was bigger than we’d thought,” says Ashley.

Preston was soon transferred to the Children’s Health℠ Level IV Neonatal Intensive Care Unit (NICU). His testing after birth confirmed the prenatal findings of a significantly abnormal tricuspid valve.

“The tricuspid valve is a door that helps blood move through the right side of the heart,” Dr. Sing explains. “Preston’s tricuspid valve opened normally but did not close correctly, leading to severe leakage of blood backwards in his heart,” says Dr. Sing. “There was actually so much leakage that the heart was unable to pump any blood forward into the lungs causing a condition called pulmonary atresia.”

The day after Preston was born, his team performed a specialized cardiac catheterization procedure to recreate the connection between his heart and lungs. While the procedure was successful, Preston’s oxygen levels remained too low to go home.

Three weeks later, his team performed a different catheterization procedure called a patent ductus arteriosus (PDA) stent to improve blood flow to Preston’s lungs. While this did lead to some improvement, Preston began to develop low blood pressure and circulation problems, and his oxygen levels were still not as high as they needed to be.

Then, on the night his oxygen levels dropped to 12%, his care team – including cardiac intensivists, interventional cardiologists and surgeons – were prompted to move more quickly toward surgery.

Defying the odds

Preston’s care team knew that only a handful of kids a year undergo surgery to repair a dysplastic tricuspid valve in the U.S. But they also knew that Children’s Health was home to a surgeon with an ability to completely remodel heart valves on the tiniest of babies for all types of congenital heart conditions: Nicholas Andersen, M.D., Director of the Complex Biventricular Repair Program and Associate Professor of Pediatric Cardiothoracic Surgery at UT Southwestern.

“Many centers won’t operate on newborns like Preston who have a dysplastic tricuspid valve and a failing circulation because it’s such a complex and high-risk surgery. But our team felt confident that we had a good chance of performing a successful surgery, which was his only remaining treatment option. And his family was willing to take a leap of faith with us, which is huge,” says Dr. Andersen.

Ashley and Trever sat down with Dr. Andersen to go over the surgical plan, the possible outcomes, and what to expect afterwards.

Plus, we’d seen him on Good Morning, Texas a week earlier and somehow that felt like an extra security blanket.

Going above and beyond

At 20 days old, Preston was wheeled into the operating room for a complex, 5-hour, biventricular repair surgery. As they anxiously waited in several corners of the hospital, Ashley and Trever received text updates.

“Those hourly text updates gave us so much peace of mind,” says Trever.

And after they knew surgery was over and had gone well, Dr. Andersen called Ashley and Trever into a private room.

“Just a few hours post-surgery, Dr. Andersen went over a PowerPoint presentation with pictures of Preston’s heart and his new, normal circulation, which translated into totally normal oxygen levels – for the first time. He spent over an hour with us, describing everything he’d done to our tiny baby’s heart. It was amazing,” says Ashley.

And just five weeks later, Preston was healthy enough to go home.

Life as a typical 9-month-old

Looking back, Ashley and Trever still cannot believe they have a baby boy who looks and acts like a completely typical 9-month-old.

“It’s been a crazy rollercoaster ride, and we still can’t believe how well he is doing,” says Ashley.

Preston started out in the first percentile for both height and weight. Now, he’s 23rd percentile in weight and 67th percentile for height. He’s also eating well and sleeping through the night.

Trever describes Preston as a happy and determined baby. “He’s always smiling. But he also knows what he wants,” he says slyly.

Their appointments with Dr. Sing in Plano, which is just 20 minutes from home, have become fewer and further between. And while it’s likely that Preston will need a follow-up heart surgery, he may not need it for several years.

“The whole team is so impressed with how well Preston is doing,” says Dr. Sing.

Words of wisdom for others

Ashley and Trever have had some time to reflect on their experience in the NICU with Preston. And they offer some words of wisdom for other families facing a tough diagnosis or a long hospital stay:

• Be very patient. Stay informed, ask questions, take notes – and ask questions again.

• Don’t compare your baby to a typical baby’s developmental standards or milestones.

• Watch how much time you spend on social media groups. The bad stories can induce unnecessary stress and the good ones are not always shared.

• Listen to your baby and their cues. Let them know – through your actions, words and attitude – that you believe in them, love them and are rooting for them. Remember that they are more than a diagnosis and that you are exactly the parent they need.

• Request that the nurses you feel most comfortable with be part of your care team.

• Take time for you. If you have the chance to go home for a good night’s sleep, do it.

• Be prepared for your baby to come home with a feeding tube.

• It’s OK to feel overwhelmed, afraid, and hopeful – all at once.

• Have faith in your care team, breathe and stay positive.

To which Ashley adds, “I knew from the outset that we wanted Preston to receive care at Children’s Health because they are truly the best of the best. They have access to treatments and technology that once didn’t exist and are now saving lives every day. They also helped us to never feel alone – and to take things one breath, one appointment, one day at a time.”

Learn more

Our Pediatric Complex Biventricular Repair Programis one of only a handful in the nation to offer life-altering biventricular repair. At Children’s Health, families are cared for by a dedicated Heart Center team that performs more than 600 heart surgeries for children each year, with excellent outcomes. From diagnosing congenital heart conditions before birth to helping families understand what lies ahead, we’re here to support parents and children at every step of the journey.