This little guy has multiple birth defects, including a serious heart condition, but he also has a big fan club at Riley.
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
It was at the 20-week ultrasound for their first child that Dylan and Michelle Murphy knew their lives were about to be turned upside down.
Their baby boy had a heart defect, the couple learned, and he might have complications with his spine and kidneys as well. They were quickly referred to the Riley Children’s Health Maternal Fetal Medicine team.
The heart condition – tetralogy of Fallot – was bad enough, the couple thought. Their baby’s heart couldn’t pump blood effectively to the rest of his body. It would require pulmonary valve replacement surgery to correct.
But the rest of it? They didn’t know how to begin to process the news. What they did know is that they didn’t want to turn to Google to find out what might lie ahead.
Instead, they trusted their doctors, and they found support from other parents whose children had similar diagnoses.
DIFFICULT DAYS
“We had some dark times in the pregnancy,” Dylan acknowledged.
“Your baby being born is supposed to be the happiest day of your life, and for us it was very dark those first few days,” Michelle said.
Part of that was due to exhaustion, part due to information overload. They remember a line of specialists waiting to see them the Monday morning after their baby’s birth.
Michelle delivered baby Bryce early on the morning of Sunday, Sept. 19, 2021, at IU Health Methodist Hospital. She had labored for three days before the decision was made to do a C-section.
Bryce was immediately transferred to Riley’s NICU, but Michelle had to remain at Methodist while recovering. (The couple had hoped to deliver in Riley’s new Maternity Tower, but COVID pushed back the opening to November.)
She knew that she would be allowed to leave Methodist to visit her son at Riley no sooner than 24 hours after a cesearan birth, so at 2:30 a.m. Sept. 20, she was dressed and ready for a police escort to take her the mile distance to Riley.
As the couple dealt with the devastating news that their baby boy had multiple birth defects, they learned there was a name associated with it all, an acronym really – VACTERL.
MULTIPLE CHALLENGES
The V stands for vertebral anomaly, and in fact Bryce has one of the most severe cases of scoliosis (curving of the spine) that Riley neurosurgeon Dr. Laurie Ackerman has ever seen. He likely will be fitted with braces and will undergo surgery when he gets older.
The A refers to anal atresia, a condition in which the anus doesn’t properly form. Riley surgeon Dr. Barrett Cromeens corrected that defect on Day 3 of Bryce’s life.
The C stands for cardiac defect, which in Bryce’s case is the tetralogy of Fallot. Dr. Mark Turrentine operated on Bryce to place a shunt after Tet spells were causing a rapid drop in the amount of oxygen in his blood. He will have open-heart surgery at about 9 months to 12 months old to repair his heart. Meanwhile, he is under the care of Riley pediatric cardiologist Dr. Michael Johansen.
The T and E refer to trachea-esophageal fistula, which Bryce does not have.
The R is for renal anomalies – Bryce’s kidneys are impacted, though they are functioning for the time being.
And L refers to limb abnormalities. Bryce’s left ear did not properly form. He will have a hearing device implanted soon, as well as plastic surgery to reconstruct his ear when he is about 5 years old.
Children diagnosed with VACTERL association typically have at least three of these characteristics; Bryce has five. While VACTERL is not considered a hereditary disorder, the cause is unknown. The family will follow up with the Riley genetics team in March.
COMFORT AND CARE
It’s a lot for any parent to deal with, but Dylan and Michelle lean on each other and on their care team, including the NICU and heart center nurses and the NICU Nest team, who helped them through the long days at the hospital.
Bryce was at Riley for three weeks after birth, then home for two weeks, then back for 66 days after he developed problems keeping formula down.
“The nurses were awesome,” Michelle said. “There were moments when one would just stop and hug me and say, ‘Let’s take a walk.’ They were there for us.”
Those same nurses, social workers, therapists and EVS workers were a lifeline for the couple during Bryce’s extended stay, and they wanted to recognize them, so they emailed Riley President Gil Peri, whom they had met during a virtual visit to Riley by an Indianapolis Colts player.
The email was compelling and demonstrated Riley’s one-team approach, so Peri invited the Murphys to be special guests at his Riley Town Hall meeting in January, and he invited a large contingent of Riley staff to be there as well – those who had a hand in caring for Bryce.
It was an emotional scene as the care team reunited with Bryce and his parents and Dylan choked up while explaining what they meant to his family.
“We want to thank you all. You guys meant the world to us,” he said. “As much as you thought you were taking care of Bryce, you were taking care of us.”
“They were our voice when we weren’t there,” Michelle said later. “They grew to love Bryce, as I’m sure they do all their patients. It just made our heart happy. We had to acknowledge them; they got us through it.”
A SOCIAL BUTTERFLY
Bryce is now 4 months old, a happy, chatty baby who doesn’t know a stranger, his mom said.
“He’s a social butterfly. He loves being around people.”
Their journey with Bryce is just beginning, but the Murphys already have so much affection for their Riley team and are grateful that the hospital is so close to their home on the southside of Indianapolis.
Dylan thinks back to some of those early days at Riley and remembers how nurse Kelsi Pomeroy helped him develop the confidence to care for his baby, and how so many others were there to advocate for their child when he and his wife couldn’t be there.
Michelle leaned on other moms who had gone through similar stressful times with their babies, and now she wants to share their story in hopes that it will help others.
“Find a support system,” she advises new parents. “Listen to your doctors. It’s hard to know your child is going to be different, but your child is special, so never compare him to another.”
She remembers something someone along the way told her and wants others to hear it as well.
“This is your new normal,” she said. “You had a baby. You didn’t lose your baby, your baby is here. But it is OK to grieve what you thought your life was going to be.”
While they navigate the multiple appointments with Riley specialists and the day-to-day challenges with Bryce’s health, they love talking about their little guy. He is their miracle baby, they said.
“This is our life. This is our life for a reason,” Michelle said. “And this is his story. We want him to be able to see how far he’s come.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org