Former Lung Transplant Patient Pursues Dream of Becoming a Child Life Specialist

18-year-old Lizzy Highstreet was inspired by the care she received at Stanford Medicine Children’s Health

Summer is meant to be spent by the lake. And as this was the last summer before college, Lizzy Highstreet took the time to celebrate, whether it was going to the lake near home or traveling to Colorado and Mexico.

“It has been so cool that I am even able to do these things,” Lizzy said. “When we went to Colorado, I was able to go whitewater rafting. I was able to go deep-sea fishing and do what I wanted without anything holding me back.”

Back in 2018, this didn’t seem like a possibility. But thanks to the care of the providers at Stanford Medicine Children’s Health and a donor, Lizzy is getting ready to head to college to pursue a career as a Child Life Specialist.

A difficult path to transplant

Lizzy was born with cystic fibrosis, a genetic disease that impairs the body’s secretory glands, making lung mucus stickier than normal and leaving patients vulnerable to respiratory infections.

To manage the complications, Lizzy saw a team at Valley Children’s Hospital in Madera, California. The hospital partners with Stanford Medicine Children’s Health specialists, including pediatric pulmonologist Carlos Milla, MD, who cared for Lizzy in Madera and during her inpatient stays at Lucile Packard Children’s Hospital Stanford. Although her health fluctuated, Lizzy could usually attend school and church in her hometown of Visalia, California; go on beach trips with her three siblings; and play her favorite sports.

But after hospitalizations in late 2017 and early 2018, it was clear that she would need a lung transplant. Lizzy followed an unusual and difficult path to transplant. Before the surgery, she was kept alive for 37 days by extracorporeal membrane oxygenation (ECMO), essentially the “lung” function of a heart-lung machine.

The ECMO equipment carried Lizzy’s blood out of her body via plastic tubing. The equipment removed carbon dioxide, added oxygen, and returned Lizzy’s blood to her body. It requires a specialized, multidisciplinary team to successfully implement the procedure.

During this difficult time, the family leaned on their Christian faith. “When there were things that felt out of our control, we were praying for God to provide opportunities or answers for her,” Tina Highstreet, Lizzy’s mom, said in a 2018 interview.

See Related: “Breathing easy, at last—broadening the path to lung transplant for patients with cystic fibrosis”

There were ups and downs as they waited for a set of donor lungs, but when Lizzy needed it the most, they were told there was a match.

“We’re super-thankful for Stanford Children’s and for all the people there that have invested in her life,” Tina said.

Aspirations to give back

“In the last seven years, I’ve realized how important it is to surround yourself with people who love you,” Lizzy recalled. “That motivated me to get through these challenges because I wanted to get better for someone other than myself—for my doctors, nurses, everyone who was taking care of me.”

While she was at Packard Children’s Hospital, she developed a close relationship with Samantha Johnson, a Child Life Specialist.

“There were a lot of things that needed more explanation because there’s just a huge gap between what the doctor was saying and what I, as a kid, could understand,” Lizzy recalled. “Sam was an instrumental part in my whole transplant to sit down with me and go over it again. My family almost considers Sam a part of our family now.”

At her annual follow-up this summer at Stanford Children’s, Lizzy saw Cissy Si, MD, medical director of Pediatric Lung and Heart-Lung Transplant; David Cornfield, MD, chief of Pulmonary, Asthma, and Sleep Medicine; Laura Green, RN, Pediatric Lung and Heart-Lung Transplant Program manager; and Johnson again. She shared photos from senior prom, high school graduation, and her everyday life.

“Lizzy’s outlook and courage make her a true inspiration,” said Johnson. “Watching her embrace a life she once thought out of reach is profoundly moving. Her bravery and heartfelt desire to return to the hospital environment to support other kids on similar journeys speaks volumes. The insight, understanding, and empathy she brings will be invaluable to patients and their families.”

Lizzy’s tenacity and experience in the hospital have led her to work toward a new dream: becoming a Child Life Specialist.

“I know that even through the pain and heartache, God had a purpose and a plan for my life, which I now see is to use my story to share the miracle of His work with other people by coming back into the medical field to encourage other patients that they’re not alone,” Lizzy said.

The Stanford Children’s pulmonary team is ranked No. 1 in California by ‘U.S. News & World Report’ and offers care for a full range of respiratory disorders and diseases. Learn more >