UNC surgeons perform life-altering procedures on baby with rare deformities

A baby born with multiple rare physical deformities will receive the first in a series of life-altering operations today, courtesy of a team of UNC Hospital surgeons.

Adam Paulraj, born in India, was abandoned at birth. He has Bartsocas-Papas Syndrome, which has left him with a partially developed nose and eyelids and fused hands, feet and legs, among other deformities, said UNC Hospitals plastic surgeon John van Aalst.

The extremely rare condition has only 24 documented cases worldwide, van Aalst said.

“Adam is literally a one-in-a-billion kid,” van Aalst said.

“A lot of these children die in utero or early after birth, but the amazing thing about Adam is that he survived. And now he’s two-and-a-half-months old, so that puts him in an even rarer category,”
Jessica Paulraj, Adam’s adoptive mother, said his quality of life is likely to improve significantly after today’s surgery, even when it did not always seem to be the case.

“At one point, we thought we were just going to be doing palliative care for Adam,” Paulraj said.

“We didn’t know any sort of medical intervention was possible.”

Hope for the Paulraj family came in the form of online donations from around the world, paying for the surgery in full, said Stephanie Crayton, spokeswoman for UNC Hospitals.

Within six days, the $100,000 needed for the operation was collected.

“I just fell to my knees in absolute amazement and praise,” Paulraj said.

The money will go toward correcting some of Adam’s most urgent needs.

His eyelids will be reconstructed with the hope of preventing future blindness. He is also to receive a new feeding tube directly connected to his stomach, van Aalst said.

Adam will also undergo both a colostomy and cystoscopy to correct the bowel and urinary problems that left him with a serious blood infection last week, he said.

While nervous about the surgery, Adam’s parents said they look forward to being better able to feed their son through the gastric feeding tube and to Adam being able to sleep better at night with his new eyelids.

“Learning how to manage different things will definitely be a challenge. But we’ve been able to learn so much, and God has sort of carried us faithfully thus far,” Paulraj said.

Van Aalst said he is hopeful and believes the baby might even be able to walk one day.

“It is difficult to say how well he is going to do, but if you can judge how well a person does by how much he is loved, then Adam is going to do great,” van Aalst said.

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