Meet Luke: A St. Joseph's Children's Hospital of Tampa Champion

Luke was born at 38 weeks gestation via an emergency C-section and was rushed to the NICU. "We were hopeful that he just needed a little time to adjust, but the next morning as we were getting ready to visit the NICU, the doctor called to tell us they intubated Luke," says Emily, Luke's mother. "We knew at that time something was seriously wrong."

After additional testing the next day, Luke was diagnosed with Vein of Galen Malformation (VOGM).

Luke, a St. Joseph's Children's Hospital of
Tampa champion, is participating in Family
Advocacy Day 2023.

"Our entire world was immediately flipped entirely upside down," says Emily. "We went from the nervous excitement and elation of our first child being born to immediate crisis mode and being overwhelmed."

The first nine months of Luke's life were spent hospitalized in intensive care units. Luke's parents left their jobs or took demotions at work, and took unpaid leave to be able to spend every day at the hospital with him. "Our family and friends were immeasurably supportive in taking care of our home and assisting us," says Emily.

Luke underwent five embolization surgeries to lessen the blood flow through his VOGM. Once the blood flow was decreased, he steadily recovered from the pulmonary hypertension and heart failure. During his nine-month hospitalization, Luke had a tracheostomy and feeding tube placed.

No further treatment is needed for Luke at this time. While he is not, nor may never be, cured of his VOGM, he's doing extraordinarily well. He continues to be monitored by specialists and has MRIs to ensure the VOGM has not changed.

Luke was hospitalized before the initial COVID-19 lockdown, through June 2020. Hospital visitation restrictions affected Luke and his parents' quality of life. It made it hard for their support network to be there for them and, at times, only one parent was allowed to visit or be at the bedside. Additionally, his parents spent hours on the phone with insurance to get weekly supplies due to supply chain issues.

"We have had difficulties and delays in getting needed home equipment due to insurance," says Emily. "Luke was previously vent dependent and we often could not get necessary supplies due to insurance not reimbursing for it or only providing a very small number per month."

When Luke was discharged from the hospital, he had significant delays in all motor skills. He did not crawl until he was 16 months old and did not walk until he was 22 months old. But now at 3 and a half years old, Luke is running, jumping and catching up on speech delays. He is happiest when he's playing outside with his trucks.