After healthy pregnancies with her first two children, Yvette Ngo felt she knew what to expect when she found out she was expecting her third.

She surprised her husband Thomas by tucking a positive pregnancy test into an Amazon box.

The Arlington couple shared the news in their annual Christmas card. They celebrated their gender reveal with pink confetti. And they eagerly awaited the arrival of the baby girl they planned to name Zoey. 

A life-changing phone call

But a 20-week anatomy scan revealed problems with Zoey’s heart and kidney, leading to further testing. When Yvette Ngo received a call from the genetics counselor, she remembers being asked if her husband was available.

“I said, ‘Oh, he’s at work right know, but you could tell me.’ And she said ‘I’d like for you to try to get your husband,’” Yvette said. “At that moment I knew there was some bad news coming.”

Zoey had Trisomy 13, a rare genetic condition that affects development of the heart, brain and other organs. In most cases, it results in a miscarriage. When babies do survive birth, it’s often not for long.

After pressing for more help, the family met with neonatologist Dr. Terri Weinman. Her specialty is helping families navigate the unthinkable, providing palliative care, or hospice, to the smallest of patients. 

“What I do is meet with families who are pregnant with a child who has been diagnosed with a condition that is scary,” Weinman said. “And can help that family understand this might, in fact, be a life-limiting diagnosis for your baby.” 

Palliative care for infants

Weinman said providing palliative care to infants is a hard job, and one that did not exist 20 years ago. That is when Weinman said she first noticed she and her colleagues had different ways of caring for newborns who were unlikely to survive. She learned about palliative care as a specialty, but at the time it was mainly for adults with terminal illnesses, not for young children.

For two years, she spent her evenings after work with a team of healthcare providers offering hospice care to adults while looking for ways to adapt the practice for her pediatric patients. 

“We’re so focused on the medicine part of it, that we weren’t focusing on the human part of it,” Weinman said. 

She created a list of questions to review with parents — from what interventions they want to take to what memories they want to create.

“When we met Dr. Weinman and her team the first time, she would say things like, ‘So, what are we going to do when Zoey is here,’ which changed my mindset completely,” Yvette Ngo said. “Before then I hadn’t even thought about that. I was expecting the worst.”

For the first time, the Ngos began to consider what Zoey’s life, short as it might be, could look like. 

“It made us more comfortable with the situation, I mean as comfortable as you can be,” Thomas Ngo said. “She just gave us hope.”

Zoey was born on April 18, 2024. She met her parents, her siblings and her grandparents. She was baptized. 

“They made us little crafts and mementos for us to take home, like footprints, really ways to help cherish Zoey’s life,” Yvette Ngo said. “They took her heartbeat and recorded it for us. Little things that we wouldn’t necessarily think of.

Zoey even had a chance to go home. But after 36 hours of life, Zoey passed away in her father’s arms. 

The perinatal palliative care Zoey received remains rare. But for families like the Ngos, it provides a small sense of control when it’s needed most. 

“Being able to plan so much in advance and think about all the different scenarios and how we wanted it,” Yvette Ngo said. ” I think, looking back on our time with Zoey…”

“We wouldn’t have done anything differently,” Thomas Ngo said. 

This is part three of three in our series about the work being done by local health experts to address rising infant mortality rates. See more from this series here.