Baby with rare genetic condition inspires love
Posted December 26, 2011
Chapel Hill, N.C. — Dr. Raja Paulraj and his wife, Jessica, were used to seeing inspiring things serving as medical missionaries in Calcutta, India.
Prior to September, though, they had never seen anything quite like 3-month-old Adam.
Born with Bartsocas-Papas, a rare genetic disorder that produces severe physical abnormalities from head to toe, Adam was essentially abandoned in his home country after his birth.
He had a long list of problems.
Adam suffered from extensive cleft lip and palate, had no nose and dealt with urinary and rectum complications. His lower legs were also fused, among other issues.
The prognosis for Adam, like most with Bartsocas-Papas, wasn't good. The Paulraj's knew they had to help.
"There was a lot of confusion and brokenness in the family Adam was born into," Jessica Paulraj said. "They wanted nothing to do with him."
Aside from the obvious physical problems, however, Adam's heart, brain and organs all functioned properly.
Raja Paulraj, a psychiatrist at the hospital where Adam was born, said there was no reason Adam shouldn't have been given the chance at a normal life.
The Paulraj's quickly decided to adopt Adam and try to find him treatment.
"If this baby has everything normal inside, what else can prevent him from living?" Raja Paulraj said.
Adam's story eventually came to the attention of Dr. John van Aalst, a crani-facial plastic surgeon at the University of North Carolina at Chapel Hill Medical Center.
He was drawn to Adam's face and said he knew immediately he wanted to help.
"There really is beauty in every face," Van Aalst said. "I think what Jessica and Raja saw in Adam was perfection."
Van Aalst organized a team of surgeons and a strategy or procedures that will take years to complete. Meanwhile, friends mounted a fundraising campaign.
During Adam's first surgery in late November, doctors completed a corneal transplant and gave Adam eye lids. It's the first step in a long road ahead for an inspiring child.
"To me, the biggest thing Adam has going for him is two loving parents," Van Aalst said.
Adam's parents take every opportunity to hold him.
"He really has developed quite a personality," Jessica Paulraj said. "It's very easy to call him our son and to love him."