Conor: Looking Beyond Congenital Heart Disease Care

Conor’s parents, Amanda and Branden, were filled with all the same excitement and anticipation most parents are when they’re expecting their second child. Their daughter, Brooklynn, would have a little brother to play with and the house would be fuller and happier. But when Amanda went for her 20-week ultrasound, the family's plans started to change.

“When I first heard the diagnosis, it was a little devastating,” says Amanda.

“I didn’t know what to think,” says Branden. “I wasn’t scared or anything, I just thought, let’s take this day-by-day and see what happens.”

A born fighter with hypoplastic left heart syndrome

Conor was born in March 2020 with hypoplastic left heart syndrome (HLHS), a rare and serious congenital heart defect. The diagnosis came at Amanda’s 20-week ultrasound, around the time the COVID-19 pandemic was on the rise. Their doctor recommended that Amanda go to the Colorado Fetal Care Center at Children’s Hospital Colorado, where they would have all the specialists they needed under one roof. And since Conor was diagnosed before birth, our doctors would be ready to begin treatment with a comprehensive care plan as soon as he was born.

Conor was born at 39 weeks and underwent a heart catheterization and balloon atrial septostomy directly following his birth to help prepare him for surgery. On his fourth day of life, Conor underwent a Norwood procedure — his first of several heart surgeries.

“It was definitely a roller coaster of emotions, but we made it through,” says Amanda. “He’d be in for his first heart surgery and then he could go home for a little bit and have kind of a normal life but then we’d obviously have to come back a few months later.”

Unfortunately, Conor’s complicated medical course required him to stay in the hospital for nearly 6 months, during which time he underwent his second surgery, a hemi-Fontan procedure (also known as the Glenn procedure).

He then returned home and aside from several procedures and some short hospital stays, Conor was able to be at home with his family until he was about two and a half years old. During this time at home, he participated in home-based therapies and attended the Cardiac Neurodevelopmental Follow-Up Clinic.

Conor underwent his Fontan procedure when he was two and a half, which his family hoped was his final of three heart surgeries. He was able to go home after 10 days.

While home preparing for the holidays, Conor started to experience some complications and developed a buildup of lymphatic fluid. Conor transferred to another hospital for additional management and his medical situation was further complicated while away. He needed extracorporeal membrane oxygenation (ECMO), to help give oxygen to his blood. Upon returning to Children’s Colorado, doctors determined that Conor needed a heart transplant.

Conor’s Heart Day

Conor had been in the hospital for 10 months awaiting his heart transplant when Amanda got the call that a heart was available for Conor.

“It was Heart Awareness Day, so it was also very serendipitous,” says Amanda. “I felt like this was a true sign from someone up above.”

Heart surgeon Jim Jaggers, MD, performed the transplant and the family instantly saw the improvement in Conor — and the future they wanted for their son.

“Everyone was so impressed with how well he was doing — and he looked good, healthy and back to where he should be. You kind of forget how they are supposed to be like when they are healthy, but

when that moment came it was emotional,” Amanda says.

Despite all the past complications and long hospital stays, Conor was able to return home just two weeks after his transplant.

Looking beyond heart care to neurodevelopment

Through all his inpatient stays at the hospital, our team supported Conor in ways that are not common in many other children’s hospitals. The Cardiac Neurodevelopmental Inpatient Care Optimization Program, or CINCO, helps improve the brain development of babies and toddlers with congenital heart disease who spend an extended amount of time in the hospital.

Conor’s care team integrated the program into all the care they provided and used every opportunity to make the hospital feel as much like home as possible. This meant planning care so Conor could sleep through the night, creating developmental play kits and toys that his parents could use, taking him outside to get fresh air and teaching his parents and caregivers how to confidently pick him up and hold him even when he was connected to tubes. He also spent plenty of time riding his tricycle around the hospital and doing things to actively stimulate him.

Emily Hoyt Maloney, PT, DPT, is a doctor of physical therapy who worked a lot with Conor while he was in the hospital.

“We got to know Conor quite well,” says Dr. Maloney. “And he benefited greatly from the relationships that everyone built with him.”

As with many families who are in the hospital for a long time, Conor’s parents had to juggle home life and hospital life, with Conor’s older sister, Brooklynn, at home and Conor at the hospital.

“The culture and environment here at the Heart Institute is such a unique one,” Dr. Maloney says. “The staff and volunteers become a ‘bonus family’ and find ways to bring as much normalcy into the hospital setting. I personally find that these relationships change the outcomes for our patients and allow parents and caregivers to feel comfortable stepping away from the bedside. As we strengthened our relationships with Conor, we found ways to build trust and found activities that brought him joy, while pushing him out of his comfort zone a little so he could try new things, build strength and endurance, grow and develop.”

A kid’s best friend: Galaxy the medical dog

One special relationship Conor developed was with one of the medical dogs at Children’s Colorado, Galaxy. Galaxy and his handler, child life specialist and Director of the Medical Dog Program Sarah Scott, joined Conor for many of his physical therapy sessions.

“Galaxy brought silliness, comfort, joy and distraction to our sessions,” says Dr. Maloney. “Every time Conor saw Galaxy come to his door, he would point, give you the biggest open-mouthed gasp of excitement and clap. Their bond was special and allowed us to try so many new things with Conor. Sarah and I even taught Galaxy to walk on a treadmill and ride on a swing for Conor.  We were able to leverage all aspects of the CINCO Program and therapy services to support Conor to grow and develop in a place so different than home. Conor has been through so much and is now home and thriving, he is such a special kid.”

“If we didn’t have those interventions, I think it would have been miserable for him,” Amanda says. “Them being able to give him those supports and being able to leave his room, even though he wasn’t feeling great, it still made him kind of have a life.”

Caring for the whole family

Kelly Wolfe, PhD, a pediatric neuropsychologist at Children’s Colorado who helped develop the CINCO Program, says that taking the parents or caregivers into consideration in addition to the child is a large part of the program.

“Parents and families are an incredibly important part of CINCO,” Dr. Wolfe says. “Whether the child is inpatient or outpatient, therapy interventions with trained specialists can only happen for a few hours a week at the most and parents are there 24/7. So, the program also helps parents and families learn developmental care and developmental interventions and empowers them to do the same things as they would at home like talk to their baby, sing to their baby and hold them. We also have specially trained volunteers to interact and spend time with kids like Conor, so his parents could find time to step away and recharge.”

“There was one time when I was just having a rough day and the doctor could tell I was having a day,” Amanda says. “He took my hand and said, ‘You need to take some time for yourself. Don’t feel guilty. Don’t feel like you’re abandoning him by going to get your hair done, or going to the spa, or going wherever you need to go to relax a little.’ And the doctor really made me feel like I could do this for myself — I could do things for myself and not feel guilty, because Conor does have a family at the hospital still.”

A family, whole again and eager to start their next chapter

Now fearless, outgoing, funny and kind, Amanda describes Conor as living life and happier than ever. He loves anything with superheroes, watching basketball highlights with his dad, and keeping up with his puppy, Otis.

The family is celebrating a big triumph this year — going to kindergarten. “He’s so excited,” Amanda says. “He’s like, ‘I’m going to school!’ He’s already gotten his backpack.”

Conor follows up every so often in the Cardiac Neurodevelopmental Clinic to track his developmental milestones, but his new heart is doing well. Speaking about the family’s experience with Children’s Colorado, Amanda says, “This team was essentially our second family — they knew exactly what they needed to do for him and for me. They knew how to listen and make us feel heard every step of the way.”

Now finished with one part of their journey, Conor and has family are excited to embark on their next.