The evening Tiffany and Richard Elliott’s twins were born, a group of clinicians sat down to tell them their babies might not make it. Born at Brigham and Women’s Hospital in October 2017, the newborns were almost three months premature. Each weighed less than 2 pounds and had not developed in critical ways. In the best-case scenario, Wendy, who was born first, and Abby, born four minutes later, would not breathe on their own at least until their original due date in January.
Normally, Tiffany would have turned to her mother for support. But her mother had passed away when she was only two weeks pregnant. “From the moment the twins were born, everything was very somber,” Tiffany remembers. “I realized that being a mother was going to be different from anything I had ever expected or anticipated.”
An extra month in intensive care
By January, both Wendy and Abby were breathing without mechanical assistance, but neither was eating enough to be released from the hospital. Feeding problems are common in premature babies, who often struggle to breathe and eat at the same time. Many come to associate food with discomfort and learn to avoid it.
Finally, in late February, Wendy and Abby were released from the hospital with nasogastric (NG) tubes. The small plastic tubes traveled down each baby’s nasal passage into her stomach and would provide nourishment until each started to eat on her own. At discharge, the Brigham referred Tiffany to the Growth and Nutrition Program at Boston Children’s Hospital. “They told me, ‘There’s this great program,’” recalls Tiffany. “‘You’ll have a gastroenterologist, a nutritionist, a case manager and a speech language pathologist. They’ll help you teach your babies how to eat.’”
Transition to home
On her first day home, Wendy pulled the tube out of her nose. A home health nurse re-inserted the tube but warned her parents that if Wendy pulled the tube out again, it would have to be replaced at the hospital. “After so many months in the hospital, we did not want to take her back,” says Tiffany. “We decided if she ripped the tube out again, we would see how she did without it.” Two days later, the headstrong infant removed the tube and started taking all her food from bottles. With help from the Growth and Nutrition program, Tiffany fortified Wendy’s bottles with extra calories. “After a few visits, Wendy was gaining weight nicely and no longer had any feeding issues.”
Abby was a different story. She continued to eat very little and received most of her nutrition through the NG tube. Several times each day, Tiffany would feed Wendy through a bottle and hook the end of Abby’s tube up to the machine that delivered her meals. Abby made no moves to remove the tube, but one afternoon, the 5-month-old started turning blue and waving her arms. “She couldn’t make any noise, she wasn’t breathing,” says Tiffany. Terrified, she pulled the tube out of Abby’s throat and to her relief, the baby started to cough. “I thought, okay, we’ve had enough of this.”
Tiffany gave up on the idea that Abby would start to eat as easily as her sister had and emailed Dr. Sarah Fleet to ask about a gastronomy tube (G tube). Whereas the NG tube was a temporary measure, Dr. Fleet’s colleagues would implant the G tube in Abby’s abdomen, where it would deliver nutrition directly into her stomach. The tube would stay in place until she started eating.
A new series of obstacles
Even with the G tube, Abby continued to refuse bottles. With coaching and advice from the Growth and Nutrition team, Tiffany worked hard to strike the right balance between giving Abby the opportunity to eat without pushing too hard, which might cause Abby to develop an aversion to food. “They told me to just keep at it, give her practice and be patient.”
Unfortunately, the challenges continued. Abby developed colic and screamed for hours every day, from 4 in the afternoon until 8 at night. “You could set your clock to it,” remembers Tiffany. This went on for several months. Then Abby started throwing up after every feeding. “Every single feed, every three hours, she would throw up.” This also went on for months. Slowly, however, things started to improve. With guidance from nutrition specialist, Katherine Truscott, Tiffany experimented with different formulas until she found one that helped bring the screaming fits to an end. The team also helped her adjust the number of calories at each feeding to help stop the vomiting.
Almost a year after she first came home, Abby is now eating yogurt and oatmeal mixed with milk. She still receives some of her nourishment through the G tube and won’t suck on a bottle, but has started to mimic her sister who has been eating solid food for months.
“I can’t believe we’re at this place where there’s no throwing up and no crying for four hours every day,” says Tiffany. “She’s a happy baby, she’s eating yogurt and actually smiling when she eats. It’s incredible.” The next step will be to give Abby, who has received calories through a tube her entire life, the experience of hunger. “We’ve taught her how to eat, now we need to teach her how to eat because she’s hungry.”
Finding her village
Tiffany’s first year of motherhood was an often frightening time during which she and Richard were left on their own in the wake of her mother’s death. “Everyone says it takes a village to raise a child and I didn’t have my village.” That changed, says Tiffany, when Wendy and Abby entered the Growth and Nutrition program. “I feel like every single person in that program loves my babies.”
As Tiffany embarks on the final stage of weaning Abby off the G tube, the team that has come to feel like her extended family is helping. With Truscott’s help, she has decreased the calories Abby receives through the tube so she will start to respond to hunger cues. Dr. Fleet has prescribed medications to increase Abby’s appetite and prevent constipation. And when Tiffany has questions, such as what to do when Abby has trouble drinking from her straw cup, the feeding specialist suggests solutions, such as thickening the drinks with yogurt.
Tiffany and Richard finally have time to enjoy their daughters. “We’ve got good kids,” says Tiffany. “They’re good and they’re really cute.”
Learn more about the Growth and Nutrition Program.