Baby Born With Rare Genetic Disorder Gets New Life

By Sunita Sohrabji, India west 

JACKSONVILLE, United States: On Sept. 18, 2011, a little baby without eyelids, a cleft palate, legs fused together and numerous other external disorders was born at the Burrows Memorial Christian Hospital in rural Assam.

Upon seeing their son, the biological parents determined they did not want to keep the baby. But India’s laws prohibit abandoning a baby, so the hospital was obliged to send the baby boy home with his parents.

BMCH chief Dr. Raja Paulraj and his wife Jessica heard about the baby, and learned that the family planned to poison the infant upon returning home. Paulraj remanded the baby into hospital custody, where he stayed for three days until the hospital ran out of beds.

“They had put him in a little cardboard box,” Jessica Cooksey Paulraj told India West. “No baby should have to live in a cardboard box.” Raja and Jessica took the baby – now named Adam – to their home, and adopted him.

“There was a hesitancy about what was going to happen to Adam but I felt a strong conviction that we were meant to adopt him,” said Jessica Paulraj, who has lived in India for several years, working as a nurse.

The Paulraj family is currently in Jacksonville, Fla., where the family has moved temporarily to provide Adam with a cleft palate surgery, which will begin Aug. 23. Though Jessica is a U.S. citizen, Adam is a visitor to the U.S., and therefore does not qualify for health care insurance. The Paulraj family has set up an online site to raise funds for the surgery and has thus far raised $100,000 of the $150,000 needed for the procedure. The surgery must be performed before October, before Adam’s U.S. visitor’s visa expires.

Last year, Adam underwent 10 surgeries in the U.S. within a span of six months.

Raja Paulraj told India West that Adam had little chance of survival after his birth, but now hopes his son will climb mountains one day. “It is such a great thing that he has come into our lives. I feel someone has designed this,” said Paulraj.

Adam Paulraj was born with a genetic disorder known as Bartsocas-Papas; only 26 people in the world currently suffer from this disorder, according to Raja Paulraj. The disorder causes facial abnormalities such as a cleft palate and lip, bone abnormalities and microcephaly – an unusually small head. All deformities are external; internal organs function normally.

Adam only has one finger; his feet – webbed at birth – have been surgically removed. His legs below the knee are fused together. He was born without eyelids, and needs both a tracheostomy tube to breathe and an ostomy bag to poop.

Shortly after his birth, Raja and Jessica – newlyweds at the time – took Adam to New Delhi, where he was examined by a series of doctors, all of whom recommended palliative – end of life – care. None of them had ever seen a case like Adam’s.

Fortuitously, the couple were connected to University of North Carolina plastic surgeon John van Alst, who offered an alternative.

Dr. van Alst and Jessica and Raja began communicating by e-mail to discuss the surgeries Adam badly needed. On Nov. 29, 2011, Adam came to UNC for his first surgery, and underwent a corneal transplant, a colonostomy, a diversion of the gastrointestinal tract, and an amputation of his webbed feet, among other procedures.

“Some of those early surgeries really saved Adam’s life,” van Alst told India West.

The August cleft palate surgery will allow Adam’s physicians to re-examine their work while the little boy is anesthesized, explained van Alst. The cleft palate surgery is essential now, as Adam learns how to speak, said the doctor.

In the future, Adam will need nasal reconstruction, and possible prostheses for his missing fingers. He will also need artificial legs to replace his fused limbs, which cannot be surgically straightened out, according to van Alst.

“He has a lot of struggles ahead, and the enormity of his abnormalities are pretty significant, but love makes him a perfect little boy,” said van Alst, who was born in Jaipur.

“When the doctors were explaining, I thought, ‘should we do this? Are we causing him too much pain?’” said Raja Paulraj.

But Jessica and Raja both said they were buoyed by their young boy’s perseverance. “A life so unfortunate is being redeemed into something beautiful,” said Jessica.

The young mother commended her son’s quick mind, noting an incident where father and son were playing together one evening. Raja put his finger over Adam’s tracheostomy tube as he was trying to get him to speak. Adam quickly learned and now puts his finger on the trach hole when he has something to say, said Jessica, noting his speech is more like whooshing sounds. Adam is also learning sign language.

Raja Paulraj also praised his elder son – the couple now have a second boy, Elliott – noting that kids with special needs are quick to adapt to their circumstances.

“Adam only has one finger, but he can manipulate everything with that finger. He is now trying to stand on his knees.” The proud father said his son loves piano music, which calms him down and has kept him comfortable through his previous surgeries. He smiles frequently, and laughs, which is a pleasure to hear, said Paulraj.

“Adam has taught me so much. He is such a gift to our lives. I feel someone has designed the whole thing to bring him and this huge community of support and compassion to us,” said Raja Paulraj.

Donations to Adam Paulraj’s surgery fund can be made through https://medicalfoundationofnc.org/babyadam.

Read more at www.indiawest.com