Abigail Hurlburt is a true Vermont girl. She loves horseback riding, swimming, skiing and camping. But when she drew a picture titled, “Things I’m Thankful For,” the focus was something far simpler: a glass of milk. It was a sign that — after a rough start — she’s finally able to enjoy the little things in life.
Now 9 years old, Abby was born with several health concerns, including esophageal atresia, duodenal atresia, tracheobronchomalacia and one lung, which made it difficult for her to eat and breathe on her own. Even after spending time in her local nenonatal intensive care unit (NICU), Abby was still fighting for her life. At less than one year old she was air-jetted to Boston Children’s Hospital. There, a surgical procedure by Dr. Russell Jennings, surgical director of the hospital’s Esophageal and Airway Treatment Center, allowed her to breathe on her own, while another procedure relieved her severe gastroesophageal reflux disease.
Fighting for Abby
Yet it wasn’t long before Abby’s family began to notice that something still wasn’t quite right. “She showed an interest in eating and we were feeding her through her G-tube on a continuous drip pump, but she still wasn’t gaining weight,” explains her mother, Dawn Marie. Although their local physicians insisted that this was a normal consequence of Abby’s health challenges, her parents had their doubts. “Something seemed very wrong, but her specialists in Vermont just didn’t hear our concerns.”
Abby’s primary care physician recommended that she return to Boston Children’s to see Dr. Rachel Rosen, director of the hospital’s Aerodigestive Center, which cares for children with complex feeding, motility and respiratory disorders. To be able to do so, the Hurlburts had to prove to the Vermont health insurance system that their daughter wasn’t getting the care she needed in her home state. The process took nearly a year, but they persevered and Abby finally had an appointment.
“At our first appointment, Dr. Rosen told us she thought Abby would be able to eat,” remembers Dawn Marie, who says coming to the center felt like coming home. “She recognized Abby’s will to succeed.”
A dramatic improvement
As a motility physician, Dr. Rosen recognized that Abby shouldn’t need to be on continuous tube feedings and should be able to eat by mouth, even though she was at risk for both esophageal and gastric dysmotility. Continuous tube feedings can result in a reduced drive to eat and can have a significant impact on quality of life.
Dr. Rosen recommended a gastric motility study, which revealed that Abby’s food was not, in fact, going into her stomach but was being inappropriately fed into her small bowel. After performing a triple scope, Dr. Rosen and her team discovered that Abby’s gastrostomy was in the wrong location and needed to be moved so that she could make feeding progress. By moving the tube, Abby could be transitioned to blended feeds, an important step in the transition to oral feeding and to improving her quality of life.
On the move
Dr. Jennings went to work moving the tube, which was made more challenging by the amount of scar tissue that had formed in prior operations. “It was frustrating that other clinicians hadn’t recognized this promptly,” says Dawn Marie. “But we were happy that someone had finally listened to us.”
With the tube finally in the right location, Dr. Rosen was able to transition Abby to blended feeding. Upon returning home, she became less and less dependent on her G-tube and was eventually able to begin eating by mouth and potty training. “My daughter can finally eat something I’ve cooked for her and say, ‘Yum, I like that!’” says Dawn Marie. “Her quality of life has increased dramatically.”
Looking at the whole child
Earlier this year, Abby and her family returned to Boston for a visit with Dr. Rosen — and they had a wonderful surprise. “Guess what? I don’t need my G-tube anymore,” Abby announced proudly. “Dr. Rosen almost cried because she knows how much that meant to us,” remembers Dawn Marie. “This is what we got by coming to the Aerodigestive Center: someone who looks at our entire child.” This spring, the team will evaluate Abigail to see if she is ready to have her G-tube removed.
Today, Abby still experiences health challenges, but she’s thriving. Part of a big, blended family, she’s sassy and silly — just like her twin, Eleanor, who herself endured a neuroblastoma as a toddler. “We’re all better people because Abby and Eleanor are in our lives,” says Dawn Marie. “And I’m so grateful for where we’re at now.”