For one family at Boston Children's Hospital, this Christmas brings a milestone and hope for healing.
Oliver Huffman, almost 5 months old, has spent every day of his short life hospitalized, unable to feed because he was born with an incomplete connection between his mouth and stomach. But on Wednesday, a six-hour surgery connected the ends of his esophagus.
He should be able to nurse for the first time in January.
"It's been a dream to attempt to breastfeed him," said his mother, Chelsey Huffman, 29. "I want that for him, for his health and that connection."
She and her husband, Brandon Huffman, also 29, traveled to Boston from Minnesota for the complex surgery after months of worry and soul-searching, they said in an interview outside the hospital's Neonatal Intensive Care Unit, where Oliver is recovering in a medically induced coma.
They came here because the Esophageal Airway Treatment Center at Children's has a program that is unique, according to its leader, in its ability to care for infants with esophageal atresia, a rare birth defect that affects about one in every 3,500 babies.
"Most places will see a kid like this once every 15 years, or something like that," said Dr. Russell Jennings, director of the center. "For us, it's a routine case because we see so many of them."
From October of last year to the end of September, Jennings said, Children's treated almost 200 babies with the condition.
For the Huffmans, that has meant a community of support. They have met families at Children's who journeyed from California, Kansas, Texas, and Washington, D.C., for the surgery, including two Chelsey Huffman met in a Facebook group for parents of babies with the birth defect.
"We had never met anyone." Brandon Huffman said. "And here, it's just like, 'Oh, this is so normal.' "
The Huffmans met as students at the University of Missouri and married in 2009. They waited a few years to have a child, but then learned they could not conceive naturally. They pursued in vitro fertilization and felt blessed when Chelsey Huffman became pregnant on the first try.
But soon they saw cause for worry. At a 20-week ultrasound, they learned that Chrihere was only one artery on the umbilical cord, rather than the usual pair. They were told it could be nothing, they said, though that condition can be linked to the syndrome associated with esophageal atresia.
Later, they learned the fetus had a smaller than average stomach. Then they saw that there was an excessive accumulation of amniotic fluid in the womb, because he was unable to swallow.
As soon as Oliver was born, they knew for certain that his esophagus was incomplete and that he had other defects in his cardiovascular and digestive systems that commonly accompany that condition.
"When he was born, we sobbed daily," Brandon Huffman said. "We were crying every day for the first two weeks."
This week's surgery was Oliver's fifth. He will require at least one more, probably two, his parents said. Depending on how those go, still others could lie ahead.
The parents say that their faith in God and the support of many doctors, nurses, loved ones, and generous strangers has kept them strong. They keep a storybook Bible next to Oliver's crib in the ICU and read to him every night.
They are thankful for the large team of surgeons and technicians who assembled for Oliver's surgery so close to the holiday, when many could have been with their families.
"It was such a Christmas gift that they went to the [operating room] yesterday," Brandon Huffman said. "They're sacrificing their home lives so that they could put our son's esophagus back together."
The support the Huffmans have received has convinced relatives that Oliver's life is connected to a higher purpose.
"My family's like . . . 'What does God have planned for this child?' " Chelsey Huffman said. "Because I feel like he's already made a difference in people's lives just from the journey that he's been on. He's been so resilient and just impacted people's lives already, at five months old."
Brandon Huffman added, "He's such a gift."