Family Spotlight: Declan's Story
Updated: Dec 16, 2021
For many families, pregnancy is a time of anticipation and eager excitement. First-time parents Rebecca and Greg were no exception; they couldn’t wait to meet their son, Declan, who was due to arrive in late 2020.
But at the halfway point of Rebecca’s pregnancy, they received devastating news: Declan would be born with only half a heart. While scans revealed his odds of making it were good, they were also told he would need three surgeries before the age of 5 and, most likely, a heart transplant later on. Regardless, they already felt the spark of tenacity in their son. “He can survive this,” Rebecca and Greg said.
On November 11, 2020, the day Rebecca and Greg had spent months waiting for finally arrived: Declan was born! While his delivery was smooth, Declan’s medical complications immediately unleashed a torrent of tests, appointments, and fear. “Unlike other new parents, we slept through the night,” Rebecca remembers, “but it was bad sleep. We were anxious from sunup to sundown.” Rebecca was unable to hold her newborn without a nurse’s supervision or breastfeed him normally. The experience, she recalls, was traumatic.
In those early days, as the new parents struggled to balance their joy and fears, Declan’s medical team reviewed his case. In early December, they determined that a heart transplant was the one-month-old’s only course for survival. Knowing that the family’s home in Cheyenne, Wyoming would be too far from Children’s Hospital Colorado (CHCO) for Declan to meet the criteria for surgery, a social worker told them about Brent’s Place – a nearby long-term care facility for families facing medical emergencies. Two days later, an apartment opened up and the family moved in.
The first thing Rebecca noticed about their new home-away-from-home was the kitchen: “I was so excited!” Rebecca remembers. Unable to use the communal kitchen in their previous short-term accommodations due to Declan’s immunocompromised status, the family had been relying on takeout. The unhealthy food “really affected how we felt,” she said, so the idea of being able to cook and enjoy a nutritious meal together in a safe and clean environment made all the difference.
While their housing needs were met and respite programming opened up to them, the family faced several big scares over the next two weeks. Declan went into cardiac arrest and developed major kidney and gut damage. Days later, a disturbing lack of movement on his left side set off more alarm bells. A subsequent MRI revealed that, at only two months old, Declan had suffered several strokes. The team at CHCO worked tirelessly to mitigate the damage, removing him from the transplant list in the meantime. “Doctor Buckvold saved his life,” Rebecca reflects with gratitude. Brent’s Place also played an important role during this time of instability, providing ongoing financial respite, a comfortable space to call home, and practical support that Rebecca and Greg knew they could count on throughout the ups and downs.
Little Declan’s fighting spirit remained steady. He recovered quickly from the scares of early 2021 and by February was declared eligible for a transplant once more and relisted. On February 25, Rebecca and Greg received the call they’d been waiting for: there was a heart for Declan. In less than twenty-four hours, the transplant was underway. “It was a shock how quickly it all came together,” Rebecca recalls.
Throughout the spring, Declan’s health improved rapidly. By April, he was discharged from the hospital for the first time in his life. The family spent six months recovering together at Brent’s Place, where meal support continued to play a big role in their healing. “When something traumatic happens, everyone offers food as comfort,” Rebecca remembers. “That’s what Brent’s Place did. Three times a week, they said, ‘Let me make you dinner.’” When Easter came around, the family received a basket filled with goodies – a bounty Rebecca remembers with a laugh.
While Declan was too young to play with some of the older children living at Brent’s Place, he spent much of his recovery watching them in awe as they played outside. “We’d sit on the balcony and wave at the other kids,” Rebecca says. “Declan loved it.”
In August, the family was finally given the green light to leave Declan’s first home – Brent’s Place – and head back to their own hometown in Wyoming. Today, Declan is a happy, smiley baby with a definite goofy streak. “You would have no idea what he went through,” Rebecca says. As Declan’s first birthday approaches, Rebecca and Greg are grateful to be looking to the future with confidence. For a kid as courageous as Declan, it’s only fitting that his first trip around the sun is celebrated in style: with a space-themed celebration attended by his loving family.