Dorothy Hardy “doesn’t walk, she dances,” says her mom, Carrie. “She just waltzes around the house, singing songs she makes up. She’s not to be stopped.” In fact, when the little girl injured her leg at the playground, she taught herself to dance while wearing a cast. It’s a resilient, determined attitude that Dorothy — now two-and-a-half years old — has had since she was diagnosed with jejunal atresia as a newborn.
In this rare disorder, a portion of the small intestines called the jejunum twists around the artery that supplies blood to the colon, resulting in an intestinal blockage. After ensuring that her heart and lungs were strong enough for major invasive surgery, physicians removed the blockage but left Dorothy with a reduced amount of intestine — more than what could be considered true short bowel syndrome, yet not enough to function optimally.
For nearly a year, Dorothy and her parents existed in this gray area. A month on total parenteral nutrition (TPN) in the neonatal intensive care unit helped her gain a few grams, but also led to liver damage. Her physicians recommended a medium-chain triglyceride formula, but that only worked for a few weeks before her body rejected it. Although doctors believed that it would be months before Carrie could breastfeed her daughter and had advised her to stop pumping, she wasn’t convinced.
“I told them, ‘I can’t stop pumping. What if she needs it?’” Carrie remembers. As it turned out, breast milk was the only liquid that her daughter was able to tolerate. She began to gain weight, and started to transition to solids around 8 months. But then, says Carrie, “the problems started again.” Soon, Dorothy’s weight had plateaued and the family was back to making regular trips to their local hospital.
Looking for answers
The next few months held ups and downs as the family relocated from Delaware to Tennessee and continued to struggle with Dorothy’s health. She had lost her appetite, developed severe anemia and was hospitalized. “Every doctor we met said they just didn’t know what was going on with her,” says Carrie, whose mother, a nurse, helped push for answers.
After a difficult 3 months, Dorothy’s new pediatrician wasted no time in telling them that they needed expert care. “One of the hospitals he recommended was Boston Children’s Hospital,” says Carrie. “I immediately reached out and started the process of getting an appointment.”
‘Like I could finally breathe again’
Even before Dorothy had an appointment at Boston Children’s Center for Advanced Intestinal Rehabilitation (CAIR), her parents noticed a difference. “Megan McGivney, the nurse practictioner, spent 45 minutes on the phone with us, asking questions and helping prepare for our appointment,” says Carrie. “Dorothy wasn’t even a patient yet but Megan took the time to help. I felt like I could finally breathe again.”
Once in Boston, the Hardys met with Dr. Christopher Duggan, CAIR’s medical director, to formulate a treatment plan. “He’s very compassionate and full of information,” says Carrie. “He answered every question I had — and I had pages of questions.” Associate surgical director Dr. Biren Modi and clinical social worker Jessica McCaig have also worked with the family.
Peace of mind
Today, Dorothy still faces challenges but has exceeded all growth expectations. And her parents feel comfortable knowing that she has a dedicated team on her side. “I know we’ll always have her team at CAIR, no matter where we live,” says Carrie. “The peace of mind that provides is priceless.”
When she’s not creating her own song-and-dance routines, Dorothy enjoys playing with her older brother, looking at books and just being a kid — and she doesn’t mind traveling north for care. “We needed to know that we had done our absolute best for our daughter,” Carrie explains. “And for us, Boston is the best.”
Learn about the Center for Advanced Intestinal Rehabilitation.