“He’s our little Superman,” remarks Tessa Daniels, as her two-year old son, Sawyer gallops around the living room on a sunny autumn day, wielding a plastic action figure as a battering ram and thwarting his mother’s attempts to maintain some order amongst the toys, blocks, books and other accessories of a busy young family’s life. “He really is a miracle.”
Sawyer is blissfully unaware of his superhero status as he continues with the work of being a healthy toddler. There are things to climb on, things to jump off, Ninja moves to practice, and a yogurt snack to share with the family dog.
A barely-visible pale strip of a scar running down his chest is the only remaining physical evidence of Sawyer’s dramatic first few days and weeks of life – an adventure that began with an eagle-eyed BMH Birthing Center nurse noticing eight hours after his birth that Sawyer’s color looked “a little off”. The ensuing days found Tessa and Elijah Daniels following the giant Boston Children’s Hospital (BCH) ambulance on a harrowing ride to the BCH Neonatal Intensive Care Unit where their infant son underwent an immediate cardiac catheterization, followed by open-heart surgery at six days old.
Tessa and Elijah Daniels were thrilled to learn that their second child was going to be a boy. They were excited to welcome a new baby into their growing family which included 18-month old sister Penelope and a horde of closely-knit cousins, aunts, uncles and grandparents. Tessa had a healthy and unremarkable pregnancy, cared for by the team at Brattleboro OB/GYN and Four Seasons Midwifery. “I had heard really good things about BMH, so I was excited to be delivering there,” she says. Her prenatal testing and ultrasounds raised no concerns, so when her due date came and went with no signs of labor, her providers recommended that she be induced. “That was NOT what I wanted, but when I think about it now, it makes perfect sense – he needed to be with me, getting stronger and growing as much as he could,” says Tessa. When Sawyer finally came, he came quickly – so quickly that his dad Elijah, who had stepped out for a moment, almost missed his birth.
“We were over the moon with excitement,” they recalled. “Our parents came, Penelope came in for a visit, other family stopped in to meet him, – it was such a happy time. Everything was fine, everything was perfect.”
As darkness began to fall late in the afternoon, and all the visitors had departed, the new parents were enjoying some well-deserved rest. “We were remarking how great Sawyer looked – how he had no jaundice, his color looked great, he was beautiful, he was perfect,” remembers Tessa. “The lights were dimmed because I was going to try and take a nap, and then Lindsay came in and introduced herself as the nurse who was going to be taking care of us that evening.”
“I can’t remember exactly what she said,” says Tessa “but it was along the lines of ‘He looks a bit dusky, I’m going to bring him to the nursery so I can check him out.’”
After thinking that a routine check was taking longer than expected, Tessa and Elijah walked down to the nursery “And it was immediately clear that the team was concerned,” she says. “After that point, everything is a bit fuzzy,” she continues. “We called our parents and said ‘You have to come back, something is really wrong.’”
The BMH team gathered around Sawyer’s bassinet strongly suspected that he had transposition of the great arteries (TGA), a rare but serious congenital heart defect in which the two main arteries leaving the heart are reversed. TGA changes the way blood circulates, leaving a shortage of oxygen in the blood flowing from the heart to the rest of the body. Young Sawyer’s parents did not know at the time that the condition is almost always fatal without surgical intervention.
Though many of the details are hazy, Tessa and Elijah remember the medical team quickly moving to start an IV and put an oxygen hood on their brand new baby. “It was horrible seeing all that,” they recalled “But the Birthing Center nurses were so great. It took three of them to coordinate all the IV lines and oxygen tubing, but they made sure we could still hold him and have skin-to-skin time with him. They understood that we needed this time with our baby, and they did everything they could to make sure that happened, even though it must have been terribly stressful for them as well.”
A decision was quickly made to transport Sawyer to Boston Children’s Hospital, which has one of the nation’s premier pediatric cardiac surgery programs. It was an exceptionally foggy evening, making a helicopter transport out of the question, so BCH sent their Advanced Life Support ambulance up to Brattleboro to fetch the newborn.
The wait for the BCH ambulance to arrive was excruciating. One of the few things Tessa remembers about those hours is Lindsay, the nurse who initially raised the concern about Sawyer’s color, coming in to her room. “She knelt down beside my bed and she said ‘I’m so sorry this is happening to you,’ and all I could think was ‘You saved my kid’s life!’”
“I think about this a lot,” says Tessa, as her voice tightens. “I think about how hard her job must be some days, having to tell parents that there is something wrong with their baby…”
“I think about all the ‘what-ifs’ says Elijah. “What if Lindsay and the other nurses didn’t have the skills and training to spot the problem? We are so incredibly lucky.”
Upon reaching BCH, Sawyer underwent a cardiac catheterization at one day old and had open-heart surgery to correct the defect at six days old. “The heart is the size of a strawberry at that age,” says Tessa, “So it’s amazing that they are able to make such significant repairs on such a tiny organ.” After 13 days at BCH, Tessa and Elijah were able to bring their baby home to Vermont to get on with the business of healing and growing.
Lindsay Cunningham has been a BMH nurse since 2008 and today is the first time one of her patients has returned specifically to thank her for the important role she’s played in their lives.
“It’s so great to see him doing so well,” she remarks as young Sawyer, now 2 years old, tears around the BMH grounds looking for trees to climb and big rocks to jump from. “I’m not sure what I expected, but I wasn’t expecting…” her voice trails off as she watches Sawyer order his dad to catch him as he flings himself off a boulder. “He was such a sick little boy, and look at him now!”
Tessa and Elijah brought Lindsay a vase of freshly-picked garden flowers, and gently encourage Sawyer to present them to her, but he is far too busy exploring to be re-directed. The three adults sit chatting on a bench in BMH’s Healing Garden, Tessa and Elijah recounting some of the details of Sawyer’s surgery and subsequent recovery.
“I don’t often get to see my patients after they leave the hospital,” says Lindsay. “So to have them come back to touch base is really special.” While Sawyer may not yet be aware of the life-saving role Lindsay has played in his life, his parents certainly are.
“Lindsay’s our guardian angel,” says Tessa. “We wouldn’t have even made it to Boston without her and we think about her all the time.”
“We’re always recommending BMH to people as the place to have your baby,” Tessa continues. “Even after we were no longer technically their patients, the Birthing Center staff would call to check in and make sure we were doing OK. Lois, my midwife would call me while we were still at the hospital in Boston and remind me to take care of myself as well. It really makes you feel good that they care so much. They saved our kid’s life, and that’s the 100% truth!”
While the memory of Sawyer’s dramatic entry into the world will always be part of the Daniels’ family narrative, they are living their lives today secure in the knowledge that their son is healthy, happy, and thriving. Other than an annual visit to the cardiologist for a routine check-up, the only other medically-necessary procedure in Sawyer’s future will be a treadmill test when he gets to the age when he might choose to play team sports.
Their experience has inspired Tessa and Elijah to reach out to other families coping with pediatric heart defects, and raising awareness has become a family tradition. In the early summer of 2015, as Sawyer’s second birthday approached, a 16 member family team – siblings, aunts, uncles, grandparents and cousins – made the long trek down to Boston to join over 4,000 others in the Boston Children’s Hospital Eversource Walk For Kids. Though many families walked the 7-mile course together in matching outfits, Sawyer’s was the only team in attendance sporting fire engine red team capes. Emblazoned with “Sawyer’s Warriors” across their backs, the team was led by a grinning red-headed toddler, perched on his dad’s shoulders. His cape, the smallest of the bunch, read “I’m Sawyer!” and was accented with, what else: a Superman logo.