Cillian's First Year: A Heart Story

When Cillian was born at Brigham and Women's Hospital, his parents Brynne and Sam were frightened, but also immensely grateful. They knew he was in a hospital that could care for him, and he had a team of doctors in his delivery room, ready to help.

Brynne was able to hold him against her chest in the delivery room, which she had thought might not be possible. When she saw him later in the cardiac intensive care unit (CICU) at Boston Children's Hospital, she was even able to breastfeed him briefly.

That first night in the CICU, Brynne and Sam sang Cillian the song they had sung to him every night throughout Brynne's pregnancy. They trusted he would recognize the song, and feel soothed. Then, Brynne and Sam settled in for what they knew would be a long journey.

Cillian was soon ready to move to the step-down unit, since he no longer required intensive care. His parents settled into a new routine of hospital life, squeezing in work in law school classes alongside Cillian's care. He continued to face some challenges, including a stubborn infection, but generally started moving in the right direction.

Brynne and Sam knew that now that he was feeling better, Cillian had to learn "how to be a baby," as Brynne put it. The first big goal was for Cillian to learn to eat again, and he had daily feeding therapy with a speech and language pathologist to develop his latching, sucking, and swallowing skills. Brynne and Sam were present for his therapy sessions, so they could learn how to support him and continue his learning.

As Brynne and Sam got to know their baby, they learned what he liked, and what soothed him. Cillian was happiest when a parent was holding him, rocking him, and singing to him. When his parents could not hold him, they could still soothe him with music. Brynne discovered that if she sang to him during uncomfortable procedures, Cillian would stay quiet and relaxed.

Cillian also loved listening to his parents read to him. Every day, Brynne and Sam read books aloud to their baby, and noticed as he calmed in response to their voice. He would often hold onto their hand as he listened, curing his tiny fingers around their bigger one.

Brynne describes herself as a "planner," but she quickly learned that a congenital heart defect diagnosis can bring a great deal of uncertainty that is impossible to plan for. She realized that in order to cope with Cillian's illness and hospitalization, she needed to focus on the present moment.

She practiced paying full attention to what it felt like to hold Cillian, to feel his body, watch his breaths, and hear his little sounds. In these moments, she was able to feel gratitude and joy, and to interrupt her urge to worry about the future.

Cillian worked hard with his therapists and parents, and his body got stronger and stronger. Finally, he was able to eat as much as he needed by mouth.

When Cillian was 6 weeks old, he was ready to go home for the first time. His parents took a picture of him in his carseat, finally leaving the hospital. His parents knew the transition would be hard, but they were ready.

At home, his parents had to act like nurses, managing his medicines and keeping track of his vital signs. They worked hard to communicate with each other and give each parent rest and respite. They knew that they needed to take care of themselves and each other in addition to Cillian in order to cope with this challenge.

Like many babies with single ventricle disease, Cillian was expected to go through three staged surgeries: the Norwood, the Glenn, and the Fontan. The time between the Norwood and the Glenn is called "interstage," and can be a particularly difficult period for many babies.

Brynne and Sam were aware of the risks of interstage, but were determined to help Cillian through as well as possible.

One ongoing challenge was feeding, and Brynne and Sam worked with their speech and language pathologist to find creative ways to feed Cillian so that he continued to gain weight and have energy.

Sam and Brynne also helped Cillian learn new ways of moving, communicating, and playing. They always focused on him as a baby first, not a patient. Every day, they played with Cillian, gave him different kinds of toys, and helped him work on skills such as holding up his head, rolling over, and sitting up. They continued reading to him, and of course, they sang to him every day.

Cillian was 5 months old when he went in for his Glenn operation. His parents were hopeful that the Glenn would be a positive turning point for Cillian, as it is for many babies. They knew that a successful Glenn surgery can help kids feel more comfortable and energetic, and they looked forward to Cillian being healthier and happier.

Cillian came through the surgery well, and his parents were able to hold his hand and sing to him as he recovered. After just one day, he was getting ready to head down to the step-down unit.

After absorbing Cillian's new diagnosis, Brynne and Sam threw themselves into his recovery and rehabilitation. He remained in the CICU for 3 weeks, and received physical therapy, occupational therapy, and speech and language therapy even as the medical team worked to stabilize his body.

When Cillian was finally well enough to move to the step-down unit, his intervention continued. Along with a team of therapists and a Cardiac Neurodevelopmental Program psychologist, Cillian's parents worked on his feeding, sleeping, and physical strength.

When Cillian was 7 months old, he was healthy enough to transfer to Spaulding Rehabilitation Hospital. At Spaulding, Cillian got intensive therapy, and made rapid progress in relearning skills like head control, rolling over, and sitting up. He got better at eating, and started eating solids.

After 60 days in the hospital, Cillian was once again ready to go home with his parents. Brynne and Sam felt prepared, and new how to take care of their baby both physically and developmentally.

Cillian was set up with Early Intervention (EI), and continued receiving PT, OT, and Speech. His parents also made sure to stay in regular contact with his doctors.

As Cillian adjusted to life at home, he made steady progress in his development. Soon he was rolling, smiling, and laughing. He could hold up his head and babble. He loved his toys, his books, and of course, singing with his adoring parents.

Cillian had a baseball-themed first birthday. Brynne and Sam photographed their beautiful birthday boy pushing himself up onto his forearms, holding up his own head, and grinning ear to ear.

Brynne and Sam regularly checked in with themselves and each other, and were well aware of the toll the past year had taken on them. Brynne recognized that they were experiencing post-traumatic symptoms after seeing Cillian in life-threatening situations, and she realized they needed to get professional help.

Brynne found a therapist who could work with people managing medical trauma. Through regular counseling, Sam and Brynne were able to understand and manage their thoughts and feelings more effectively, and to learn coping strategies to help with ongoing stress.

Shortly after his first birthday, Cillian celebrated his first heartiversary: the anniversary of his Norwood operation.

As they marked this occasion, Cillian's parents reflected on everything their family had been through, and everything they had learned. They felt infinite gratitude for the gift of their son, and for the progress he had made and was still making after his injury. They committed to continuing to support him through his heart journey, celebrating each happy moment, and giving him the intervention he needs to go as far as he can.

Happy Heartiversary Cillian! We are so proud of you and can't wait to see what you do next.