From grief to gratitude
Amber and Jon Trussell honor their son Mason’s journey by giving back
Amber Trussell was 35 weeks pregnant with her second child when she began experiencing preterm labor. Within an hour of being admitted to the hospital, they lost heart tones on the baby. She was rushed to an emergency C-section where baby Mason was born not alive.
After 16 minutes of CPR, Mason was resuscitated and emergently transported by our Teddy Bear Transport team to our Fort Worth medical center. Mason experienced hypoxic ischemic encephalopathy (HIE), or lack of oxygen to the brain. As a result, he was having a significant amount of seizure activity.
Once admitted to our neonatal intensive care unit (NICU), Mason began a treatment called medically induced hypothermia. He was placed on a temperature-controlled blanket to cool his body temperature to 92 degrees.
Scared and reeling from the traumatic series of events, Amber and her husband, Jon, asked doctors not to sugarcoat any information. Their neonatologist gently delivered devastating news: Mason likely would not survive, and if he did, his quality of life would be poor.
Despite the heartbreaking possibilities, Amber and Jon had hope. They were surrounded by compassionate caregivers who supported them during the most difficult time of their lives.
“I feel like, from the first second, everybody was handpicked for that day,“ said Amber. “If that was going to happen, we had the most perfect people for it. They handled our situation with so much grace and so much love.”
After 72 hours, Mason was warmed to his normal body temperature and an MRI provided even more hope, revealing drastically less brain damage than doctors expected. Mason remained on life support for an additional week but recovered and went home less than three weeks after he was born. But not before big sister, Maci, got to meet him.
Our Child Life team helped the Trussells explain the situation to their 3-year-old daughter. This was extremely helpful and comforting to parents who were already dealing with so much.
At 3 months old, Mason’s family learned that he had suffered hearing loss as a result of the HIE. He received hearing aids at 4 months old and started speech therapy once a week, which he continues to this day. He received months of at-home feeding therapy, underwent genetic testing, has been seen by Pulmonology, Gastroenterology and Neurology, and is closely monitored through our NICU Early Support and Care Transition Center.
Today, Mason is a healthy, silly 4-year-old. His parents, grateful for all of the love and support their family received, are giving back in big ways. For his birthday each year, they collect books, snacks and other items. Providing these items to other NICU families helps the Trussells deal with the grief of what happened and turn it into something positive.
To help raise funds and awareness, Amber and Jon told their story live on our Country for the Kids Radiothon for the past two years. Last year, they joined Blue Peaks Giving Circle, a donor group that funds innovative programs and initiatives throughout Cook Children’s.
“The way everything happened, and how perfectly we were cared for, it always feels like home to us,” said Amber. “We just want to be a part of something where we can give back and be involved.”
We’re glad Cook Children’s feels like home to the Trussells because they will always be part of our family.