By Maureen Gilmer, IU Health senior writer, email@example.com
One year ago, we told you the story of a baby boy who was stealing the hearts of everyone he met at Riley Hospital for Children.
Born with multiple birth defects, including a heart condition and a severe case of scoliosis, he and his parents, Dylan and Michelle Murphy, were in for a rough road.
As we kick off Congenital Heart Defect Awareness Week, we decided to check in on little Bryce Murphy, now that Dr. Turrentine has completed the full repair on his heart, which failed to form correctly in the womb, leading to a condition called tetralogy of Fallot.
ToF, which is estimated to occur in one of every 3,000 live births, actually includes four defects: a narrowing of the pulmonary valve, a hole between the bottom heart chambers, a shifting of the body’s main artery (aorta), and a thickening of the right lower heart chamber.
Michelle Murphy recalls the moment Dr. Turrentine came out into the surgical waiting room at Riley after completing Bryce’s repair.
“He said it couldn’t have gone any better, and I just fell to the floor and cried. That was all I needed to hear – this chapter is over. His heart is better.”
Unfortunately, two days post-surgery while still hospitalized, Bryce’s oxygen levels were dropping and he tested positive for the RSV virus.
“Poor kid coughed and coughed,” his mom said, adding that she and her husband refer to these setbacks as Murphy’s Law in the Murphy family.
Now recovered, Michelle said, “Bryce is like a new kid since his heart surgery. He’s always playing with his toys, always on the move, always smiling, never a fussy baby.”
Whenever they see Dr. Turrentine around the hospital, he always recognizes them and stops to chat, a small thing that means the world to them.
“He’s just so sweet to his families. He really is a wonderful man.”
Bryce is developmentally behind, partly due to his spinal condition (Riley neurosurgeon Dr. Laurie Ackerman called it the worst she’s ever seen), and he just recently learned to sit up. But he continues to work with physical and occupational therapy to move toward milestones.
He sees neurology for hypoxic-ischaemic encephalopathy (caused by a loss of blood and oxygen flow to the brain) and craniosynostosis, a birth defect in which the bones in a baby’s skull join too early. Dr. Ackerman and the neurosurgery team completed a repair for the latter condition in October.
Despite it all, Bryce is thriving, his parents say.
“He’s just always so happy.”
That bright personality helps get them through the tough times.
“We’ve been open with Bryce’s story and our emotions and everything we go through,” Michelle said. “We have dark days.”
When people ask how they cope, she is honest, grateful for the support of a therapist through Riley who works with families of medically complicated children.
“She’s great at keeping us strong. We love Bryce and we just do it.”
And the family has a large group of supporters who lift them up and rally around Bryce. Even some of the nurses from the Heart Center at Riley still come down to see him when he is in for other procedures.
They’ve also made great friends with other parents in the Heart Center, creating another family of sorts.
Dylan’s company hosted a fundraising golf tournament last summer, raising $35,000 to support the establishment of a rehab center on the heart unit.
“That heart center just means so much to us, and we want to do anything we can for them.”
Riley Children's Health's pediatric cardiology and heart surgery program is ranked sixth in the nation by U.S. News & World Report and is the best in the Midwest for children's heart care.
Baby Bryce stole their hearts from Day 1 - This little guy has multiple birth defects, including a serious heart condition, but he also has a big fan club at Riley.