One “I love you” is all Lukas Hazen’s parents were guaranteed as he was flown by medical helicopter to University of Iowa Health Care Stead Family Children’s Hospital. Because they chose Iowa’s top children’s hospital, they’ve had 12 years of love and joy with their son, but the journey hasn’t come without its challenges.  

Josh and Jayme Hazen were warned their son might not survive childbirth after prenatal ultrasounds detected multiple brain bleeds. This revelation came 26 weeks into Jayme’s pregnancy, blindsiding the first-time parents.  

“We knew something was wrong,” Jayme recalls of her pregnancy. “We started to see some swelling around his skull on ultrasounds, and around 29 weeks, he started to have brain hemorrhages in utero. It was definitely scary.” 

Preparing to ‘fight with’ Lukas

Before Lukas was born, Jayme and Josh were given a tour of the neonatal intensive care unit (NICU) at Stead Family Children’s Hospital and introduced to the palliative care team, but Jayme went into labor early. With no time to get to Iowa City, Lukas was born early at their local hospital at 34 weeks.

The AirCare team was standing by, waiting to fly Lukas to Iowa City as soon as he was born.

“Before they flew him to the children’s hospital, they brought him back into my room to let me see him and say goodbye. I knew he was going where he needed to be, but it was still hard,” Jayme remembers. “I was not sure I would ever see him alive again. They allowed me the time to touch him inside his incubator and say, ‘I love you.’ So, no matter what happened, I had the comfort of knowing he heard his mommy say ‘I love you’ at least once.”

The couple met with neonatologist John Dagle, MD, PhD, at Stead Family Children’s Hospital once Jayme was discharged and made it to Iowa City.

“He asked us what we wanted his team to do, and the minute we said, ‘If Lukas is still fighting, we want the NICU team to fight with him,’ Dr. Dagle never looked back,” Jayme says. “Lukas has proven to be quite the little fighter. He’s such an inspiration.”

Lukas was diagnosed with neonatal alloimmune thrombocytopenia, a rare condition in which maternal-fetal platelet incompatibility leads to the mother’s body reacting to the pregnancy with antibodies, resulting in a low blood platelet count. The couple didn’t know about the genetic condition until they completed blood tests after Lukas was born. With that knowledge and with preventative treatment, Jayme’s following two pregnancies avoided this complication.

A complex medical journey

Born weighing 5 pounds, 3 ounces, Lukas received a double transfusion of blood and platelets the next day, Josh says, and was treated with blue “bili” lights as a therapy to combat jaundice.

He was discharged five weeks later but has regularly returned to the children’s hospital for a variety of health issues, including cerebral palsy, which affects his movement; cortical visual impairment, in which his brain cannot process what he sees, and serious seizures categorized as catastrophic infantile spasms.

Lukas has had both hips reconstructed and last year had spinal fusion surgery to correct scoliosis, a sideways curvature of the spine.

“It’s the hardest thing in the world to watch your son get wheeled down the hallway,” Josh says, but trust in Lukas’ care team helped calm their fears.

“They include you in decision-making and you don’t feel like a patient number,” Jayme adds. “As a parent, you feel cared for as well.”

The couple recalls a challenging time when their daughter, Raylee, was born at Stead Family Children’s Hospital and was in the NICU, when Lukas, then 3, suffered a seizure and was admitted to the hospital’s pediatric intensive care unit.

“I’ll never forget our daughter’s nurse in the NICU. I was crying, saying they were airlifting our son here and we had to go to the ED to wait for him,” Jayme recalls. “The nurse sat me down and assured me that she had Raylee covered and well cared for. She told me that I needed to be with Lukas right now and she would handle everything with Raylee.”

“We could not have gotten through those very hard days without the help from the amazing staff,” Jayme continues. “We were terrified, exhausted parents that needed help, and they were there for all of us. Josh and I literally owe our entire family to this hospital.”

12 years of love and counting

Today, Lukas uses a wheelchair, along with assistive devices to help him communicate. Mostly nonverbal, he occasionally says “mom” and has said “I love you” twice, Josh notes.

Now 12 and in sixth grade, the Muscatine boy loves swimming, music, and art.

“He’s probably the most popular kid in his class,” Josh says. “Kids just gravitate to him.”

“He’s a joy to have around and he has made Josh and I better people,” Jayme adds. “He makes the world a better place.”

Lukas regularly returns to Stead Family Children’s Hospital for checkups.

“We prayed to have 12 minutes with him when he was born, and because of the care they’ve given, we’ve had 12 years,” Jayme says. “I don’t know how to say in words how grateful we are. They continue to be there when we have questions, and I can’t speak highly enough about them and the care they give him and the care they’ve given us through all of this.”