Stony Brook helps infant survive congenital disorder

Tiny Christian Rojas has lived his entire life — 83 days — in the neonatal intensive care unit, but his confinement is being hailed as a blessing by his parents as they’ve watched their son slowly recover from a life-threatening developmental defect.

Christian was born with a condition called gastroschisis, a congenital disorder in which the intestines have emerged through a hole in the abdominal wall and are on the outside of the body.

“They saw this on my 12-week ultrasound. And my first instinct as a mother was panic,” said Nykki Hunter of Port Jefferson Station who, with her fiance, Christopher Rojas, has monitored Christian’s progress in the NICU at Stony Brook Children’s Hospital since his birth. Christian was born May 5.

“We were heartbroken when they first told us about this, but we knew that we had to get educated fast,” Hunter said of the crash course on gastroschisis that she and Rojas immediately undertook.

Hunter, a flatbed truck driver, said Christian’s five siblings are eagerly awaiting his release from the hospital, which doctors say may be within about a month. The baby’s siblings in the blended family range in age from 4 to 14.

Rojas, an irrigation technician, said news of his son’s plight launched him onto a new path of learning. Now, he wears T-shirts with the arcane word “gastroschisis” emblazoned on his chest.

“There was a time when it was hard for me to express my feelings. And here we are, it’s been such a long road,” Rojas said.

His son, who was a fragile 5 pounds 7 ounces at birth, now weighs in at a hefty 11 pounds.

Dr. Christopher Muratore, surgeon-in-chief at Stony Brook Children’s, said the baby’s case was extraordinarily complicated and marked by an extreme twist in the bowel, a condition called midgut volvulus. The contortion threatened the bowel’s blood supply.

“Many babies with gastroschisis will suffer the consequence of intestinal failure,” said Muratore, who embarked on a series of surgeries to save the baby’s life.

“When we recognized the intestine was twisted, we did what we needed to do to untwist it,” said Muratore, who worked with a team of five surgeons, 10 neonatologists — doctors who specialize in newborn care — and an army of nurses. Christian has been monitored around the clock since arriving in the NICU.

For reasons that escape medical explanation, gastroschisis, though rare, has been on the rise in this region and beyond in recent years.

In 2016, the Centers for Disease Control and Prevention issued a report on the condition, noting that prevalence had increased by about 30 percent, to 4.9 births out of every 10,000. The CDC had analyzed cases reported nationwide from 2006 to 2012. Earlier research involving the years 1995 to 2005 had shown 3.6 cases per 10,000 live births.

“We’ve seen a number of babies in our area with gastroschisis,” Muratore said. “We have meetings with families to tell them what this is about.”

Stony Brook treats about 10 cases of gastroschisis annually, Muratore estimated.

Across the Island at Cohen Children’s Medical Center in New Hyde Park, doctors also are grappling with gastroschisis.

“We’ve seen more cases this year than we have seen in a while,” said Dr. Samuel Soffer, a pediatric surgeon at Cohen Children’s, a division of Northwell Health. “We have had at least six to eight this year. It seems like every other month we’re seeing another one.”

“We actually have one here right now. The baby has been here two weeks,” Soffer said.

For Hunter and Rojas, the prospect of having their son at home is both daunting and a dream come true, they said Thursday.

“It’s going to be tough, only one of us will be able to work after Christian comes home,” Hunter said, noting that her son already has garnered local and national attention among the vast social media community of parents whose babies had gastroschisis.

“So many people were asking about him, we started a Facebook page for him,” Hunter said.

The couple is planning an event on Saturday to foster a better understanding of gastroschisis. A band will entertain and food will be free at the Red River Inn, 450 Main St. in Yaphank, starting at 1 p.m.