Raja released a laugh, sounding smooth like bubbles rising in a pool, as friend Brooke Gleason lifted his 4-and-a-half-month-old into the air with the bzzrrrrrrr imitation of an airplane. Beneath the clear plastic eye protectors taped to his face, the baby’s dark blue eyes flitted about in wonder. Everyone waited silently as people do for a child or animal’s next move, both eyes and mouths wide open. His little eyes steadied and wandered upward: ready for takeoff.
“Adam, you’re a funny fellow,” Raja said with a melodic Indian accent, delighted to see his son acting happy and healthy.
But for little Adam, the road to happy and healthy hasn’t been easy, and certainly isn’t complete.
A Different Looking Baby
Adam was born in Alipur, Assam, India on Sept. 18. He had a severe cleft palate and lip, and no eyelids. His upper and lower legs were fused together, bent at the knee, and webbed skin connected his feet. He had no fingers or toes.
“I was an administrator at the hospital,” said Raja. “That morning I was making rounds, and the surgeon was telling me, ‘We have a baby and it’s kind of a different looking baby.'”
“The more I saw him, the more I thought, ‘I have never seen a baby like this,'” he said. “It was intimidating, there were so many deformities.”
The birth parents, from a rural tribal village, insisted they did not want the baby and did not know how to care for him. Despite Raja’s encouragement to take the child home, the family protested.
“Then my lab technician in the hospital came and told me he got news from the village that if the baby comes to this village, they will poison the baby,” Raja said.
The birth parents wrote a note abandoning the baby to the care of the hospital and left as soon as the mother was able.
The infant, unwanted and unnamed, lay in an incubator with a feeding tube. The nurses were fearful, even repulsed, Raja said, and so his wife, Jessica, a nurse teaching in the area, bathed and dressed the child each day. Unsure of what to do in the long run, the couple sent out emails to friends all over the world asking for prayer.
“Special needs orphanages in India tend to be really overcrowded,” Jessica said. “I didn’t really feel comfortable just dropping him off at a special needs home because I knew he would lay like that for life. Then there was the idea of the hospital raising him, but that didn’t seem very sustainable.
“That Thursday or so there were twin babies born, and they needed the bed that Adam was in and so he was put into a box on the floor,” she said. “At that point we were thinking, ‘No baby deserves that type of treatment. We have a crib in our house. We can at least bring him there and he can get better care than he gets at the hospital.'”
And so, just shy of 1 week old, little Adam went home with Raja and Jessica, who said they were quickly falling in love with the baby. They didn’t expect him to live for very long, Jessica said, but they wanted to at least give him a sense of dignity before he died.
“We named him Adam because a lot of people were saying he’s ugly, he’s not good looking, and we wanted to contradict their statements and thinking,” Raja said. “The Bible says that Adam, the first man created by God, was created in God’s image. And so we wanted to tell the people that he’s significant, that he’s created in God’s image.”
Raja contacted friends at a hospital in New Delhi. Doctors at the hospital submitted photographs of Adam to a worldwide database and found the diagnosis: Bartsocas-Papas Syndrome, a genetic disorder generally caused by the parents being close relatives that results in external deformities like Adam’s, as well as brain, heart and other internal organ abnormalities.
“The doctor told us in the hospital, ‘Babies like this never live,’ and kind of hinted, ‘You ought to just let him die, there’s nothing that can be done,'” Raja said. “We were just sitting in the office crying and we couldn’t control our emotions.”
That day the couple heard from Brooke Gleason, one of the recipients of their prayer email. Gleason worked at UNC Hospitals and had shown pictures of Adam to a colleague, who had in turn shown them to Dr. John van Aalst, the director of pediatric and craniofacial plastic surgery. When the couple heard that van Aalst thought he could help Adam, they were charged with a spark of hope.
At the hospital where they were staying in Alipur, they had Adam get an MRI. His brain was completely normal. Shocked, the doctors did an echocardiogram. His heart was completely normal. Next, Adam went through an ultrasound of his kidneys, liver, and spleen. All were fully functioning. On the inside, Adam was almost just like any other baby.
Filled with hope for the boy’s future, Raja and Jessica formally adopted Adam on Nov. 1 and brought him to UNC for treatment.
Upon their arrival in the U.S., the couple immediately faced a high hurdle: the first surgery alone cost $100,000.
“It was a very difficult time for us,” Jessica said. “It was really hard for me, I was so emotional and fragile and thinking we were never going to get that much money.
“Basically we just shared on his website and shared with people that we needed money and people just gave,” she said. “I think we ended up getting a total of $147,000, which is just crazy to me.”
Adam has since undergone six more surgeries. He now has eyelids that he can open and close, though he does not yet blink with the involuntary regularity most people do. Doctors separated his feet and constructed an upper lip on Valentine’s Day and later put in a tracheal tube to help him breathe with the swelling around his mouth. Adam will likely be in the hospital for another week before he is released. Jessica said the surgery to correct his palate will have to wait until he is at least 1 year old.
The young family is living with UNC Hospital Sinus Surgeon Dr. Brent Senior and his family. Senior and his wife and four children frequently host guests – from UNC patients to visiting students – Jessica said, and the couple called them on their first day in town to offer to help in any way that they could.
“Since the Ronald McDonald House didn’t work out we ended up staying with them,” Jessica said. “They’ve been incredibly generous.”
For Better, for Worse
Raja and Jessica met in 2009 in Kolkata, three years after Jessica had begun her mission work in India. She was working as a nurse in Kolkata and was introduced to Raja, a native-born psychiatrist, while he was in town for a short visit. They stayed in touch and started dating that year.
The couple married two years later in March 2011.
“Then we had a baby,” Raja said with that laugh. “And everything changed.”
The couple had their own plans: to focus on their mission work and to build their marriage before having children.
Jessica traces their decision to adopt back to a Bible study they were doing in the fall.
“We had been doing a Bible study on the book of Romans,” she said. “It talks a lot about God adopting us as his children and the gospel as a picture of adoption, and so we were thinking, ‘How can we, if we’ve been adopted by God and we were once just like Adam – orphaned, destined for death, deformed – and God adopted us, then how can we deny adoption for this child?'”
And the couple said God has seen them through it.
“People have kind of told us, ‘Oh, if you take Adam that is too much, it’s going to stress your marriage,'” Raja said. “But I think we’ve felt like our marriage has grown deeper in this process of taking care of Adam. We’ve learned so much. We have a lot of time together because of Adam so we talk about a lot of things. It is really a deepening experience.”
Jessica nodded in agreement. “I think having to take such a big step of faith together has strengthened our relationship more,” Jessica said after a moment, looking up. “Me seeing him as a father to Adam has really increased my love for him in many ways.”
After the sixth bzzrrrrrrr, Raja took Adam from Gleason and settled him on his knee.
“Yes, Adam, a funny, funny fellow,” he said, glancing affectionately at Jessica, whose soul-piercing blue eyes held Adam’s gaze.
Because Adam only has a six-month visa, the young family will move back to their home in India at the beginning of May but will likely return to UNC for Adam’s palate surgery. Whether or not the family is living at home or in the U.S. for surgeries, raising Adam will take extra time and dedication.
“My friends told me, “If you take care of Adam, your mission work will be affected,'” Raja said. “Then I started asking myself, ‘What do you mean by mission work? Is taking care of Adam not God’s work?'”
Jessica and Raja know Adam will have a very different childhood experience from most of his peers in many ways, but they’re intent on supporting, loving and encouraging him in his abilities.
“We don’t want to focus on his disabilities and be worried about what he can and can’t do,” Jessica said. “We want to treat him like normal and let him figure out what he’s capable of. I always feel better when people treat him normally than when they are all weird about how to hold him and whether or not he’s OK.”
The couple said that someday they may consider introducing Adam to his biological family, despite the hostility they showed him at birth.
“There was such hatred towards him at first and this suspiciousness and this desire even to kill him,” Jessica said. “They’re a broken family but I would love for them to see him and have a relationship down the road, but I think it would take time.”
There’s doubt about what Adam’s future holds. About how mobile and independent he will be, about how he will personally handle growing into a man, about whether or not he will meet his biological parents. There isn’t any doubt, though, that Adam has a profound effect on everyone who meets him.
The UNC nurses and staff are smitten with him, to say the least, and some even spend nights at the hospital – off the clock – to watch and protect him while Jessica and Raja rest.
“My mom was saying that she thinks the reason Adam affects people so much is that his outside is so messed up, and the thing is that he can’t hide it,” Jessica said. “When you carry him down the street people notice that something’s wrong with him and he can’t do anything to hide that. My mom was like, ‘That’s what my insides are like, like my heart. It’s so screwed up. I can fix my outside to look OK so I can make it look like I’ve got it all together.’
“But Adam, Adam can never do that. He’s like, ‘No, this is who I am, and I’ve got problems on the outside,’ but he is just is OK with that.”