Christmas lights saved my son’s sight
Born with severe facial deformities, baby Adam had been left by his parents to die in hospital, but a nurse was determined to help. She not only adopted him, but found an unusual way to save his sight
Lying in his hospital crib, the barely twoday-old baby boy stared up at me, his eyes unblinking. He was swaddled in a thin blue hospital regulation blanket, but appeared to be shivering.
I bent down to pick up the tiny newborn and had to fight back tears. He had a cleft palate that had left his mouth misshapen while there was nothing but a gaping hole near his nose. He also had a huge birthmark that ran all along his forehead. “You poor little thing,” I said, cradling him. Although I’d been a nurse for more than three years, and was now teaching nurses at a college attached to Burrows Memorial Christian Hospital in Assam, northeast India, I had never seen such severe deformities in a baby.
I turned to my husband, Raja Paulraj, who is a psychiatrist and senior administrating officer at the hospital and who’d asked me to come and examine the boy. “Where’s his mother?’’ I whispered. Raja shook his head, “His parents abandoned him because of his deformities.’’
The little baby looked so vulnerable and desperate for love. I couldn’t imagine
anybody wanting to abandon someone who needed so much help.
“They can’t do that,’’ I said, hugging the newborn tighter. “Someone has to take care of him.”
Raja’s shoulders slumped. “Apparently, the family is threatening to poison him if they have to take him home,’’ he said.
The pair of us looked down at the baby who’d fallen asleep in my arms although his eyes were still open. And that’s when I realised he didn’t have any eyelids. “We can’t just leave him like this,’’ I said.
‘The family is threatening to poison him if they have to take him home’
The hospital was only small – 20 beds – and served a community who worked on the surrounding tea plantations or rice paddies. They were close-knit and looked after their families, but sometimes single mothers or those too poor to take care of another child left their newborns at the hospital.
It looked like this baby would suffer the same fate, and it tugged at my heart. “Who do you think will look after him?’’ I asked.
“He might just end up growing up here in the hospital,’’ Raja said. “He won’t have a family and no one to care specifically for him.’’
He said that if the baby survived into adulthood, he’d have to leave the hospital because only children are permitted to stay for long periods of time. It was very likely he’d end up on the streets, making a living doing odd jobs or begging.
Glancing down, I just wanted to keep this little mite safe. He had so many problems and no one to love and take care of him.
It was September 2011 and Raja and I had only been married six months after meeting three years earlier volunteering in a hospital in Kolkata. We were so busy helping and with our careers that we’d decided not to start a family for at least three years. But now here was this little boy who couldn’t be left to fend for himself. What would happen to him?
Gently, I lowered the baby back into his crib and went back to work. But I couldn’t stop thinking about him. “I’m going to visit every day,” I told Raja.
When I returned the next morning, the baby was struggling to feed. It was hard for him to take milk from a bottle because his cleft lip prevented him from sucking properly. He had to be spooned the milk and it was taking the nurses hours for each feed.
Seeing a nurse struggle, I offered to take over, and cradling him, began to feed him milk from a bowl. It took me almost an hour to finish it, but he seemed calmer at the end of it. “See you tomorrow,” I said, after putting him down.
Two days later, finding that the baby still didn’t have a name, I decided to give him one. “Let’s call him Adam,’’ I said. Raja agreed. I was still not sure what his future would be and how we could take care of him, but decided to take it one day at a time.
Heart-breaking news
Over the next couple of days, Adam underwent tests and it turned out he had a condition called Bartsocas-Papas syndrome. This is an extremely rare genetic condition; there are only 26 recorded cases of it in the world. He had no eyelids, a severe cleft lip, no fingers, and his toes were fused together. Such babies rarely lived to see adulthood without timely medical attention and surgery. No one knew if there were problems with his internal organs or if he would have mental and developmental problems. “If no medical intervention and care is provided, the condition could be fatal as he will not be able to feed because of the cleft palate,’’ a resident doctor told us. “Kidney damage, too, is a possibility.’’ Every time I held him and cuddled him, I began to love him more and more. Unknowingly, a bond was developing between us. He was such a lovely baby and after being fitted with a feeding tube – so formula could go straight into his stomach – he seemed happier. Raja and I wanted to do all we could to see that he would survive.
Determined to help, we took temporary guardianship of Adam. It was relatively easy because all it required was a document from the head of the hospital saying that we were in charge of the infant and were looking after him for medical reasons.
We then travelled to New Delhi where there are better hospitals and experts. I thought they’d be able to magically fix Adam, but the doctors there didn’t offer much hope.
“He will live for two months max,’’ one doctor told us. “I have read medical reports which say children with such a condition do not live long.’’
It was heart-breaking news, but I wasn’t going to just give up on Adam. “I’m sure there’s
some way we can help him,’’ I said to Raja and he agreed. We offered to pay for all Adam’s medical bills and insisted that a full body scan be done. We wanted to find out if there were any problems with his internal organs, which could be part of the condition.
Taking care of little Adam, feeding him and ensuring his eyes were moistened with gel every hour – a necessity due to his lack of eyelids – was difficult. We couldn’t miss an hour, even throughout the night, so we took it in turns to stay awake. “But it’s worth it so he doesn’t suffer any more than he has to,” I said.
We were happy when the results of his body scan came back: all his internal organs were fine. “On the inside, Adam is just like any other baby,’’ I told Raja, smiling.
We then returned to Assam determined first to work on correcting his cleft lip so he could feed properly. Raja sent pictures of Adam to some doctor friends of ours in the US seeking their opinion and we awaited their response.
Meanwhile, a set of twins were born in the hospital and needed the only baby bed that Adam was in. There was nowhere else for him to go so the nurses placed him in a cardboard box. I reeled when I saw him in it. I knew the medical staff didn’t mean anything by it, but it was as if he’d been chucked away because of his disabilities. Every time I saw him, I kept welling up. Was this how it was always going to be for him – being treated like some kind of garbage because he looked so different?
“My heart breaks to see him in that box,’’ I told Raja, struggling not to cry.
He looked at me. “Do you think it is foolish to think of adopting him?’’ Raja asked.
I grabbed his hand, suddenly overwhelmed with hope. It was as though Raja had read my mind. I wanted more than anything to help Adam, to hold him, but then I stopped, a niggling doubt creeping into my mind.
“Can we raise a dying child?’’ I asked, fearful of my own ability. It only lasted a second, that doubt, and then my strength came flooding back along with my love for Adam.
“We’re all dying every day,” I thought out loud. “No one is guaranteed tomorrow.”
So, just because Adam had a medical diagnosis that implied a shorter life, it didn’t mean he was in any less need of love and care.
‘Was this how it was always going to be for him – being treated like some kind of garbage because he looked so different?’
If anything, he needed it more. It was a lot to take in though. We were newlyweds and hadn’t got anything needed to look after a baby, but we both knew it was the right thing to do. “Let’s take Adam home,’’ I said. Raja nodded.
We quickly found a crib and Adam came home with us. We put his crib in our bedroom so we could look after him properly. It was a daunting task. Adam used to cry a lot because he could not feed like a normal child. We had to constantly care for him, taking it in shifts to feed and soothe him.
Of course, we were tired, as all new parents are, but we learned a rhythm in caring for him. We arranged to work in shifts in such a way that one of us was always at home to take care of Adam. Although he was crying often, there were moments, immediately after his feed, when he would just stare at me with his unblinking eyes. Those were the moments when my heart would really burst with love. I would hug him close and cuddle him, which he used to enjoy. Despite his condition, it was clear he was a fighter. “Don’t worry, baby, we are with you,’’ I kept telling him.
Small and steady victories
Now he was living with us we started the process of adopting Adam. The paperwork was intense but because Raja is an Indian citizen – I am American – there were fewer bureaucratic tangles than if both the parents were nonIndians. A month later we became his legal guardians awaiting the official document.
I still remember the day and date – Thursday, October 27 – when Adam got his official Indian passport. Seeing our names in it as his parents was one of the most moving moments of my life. Raja and I hugged each other before cuddling our little Adam. On November 2, we registered his details in the local government office, officially completing the adoption process.
I had loved Adam from the first day I saw him lying in his crib. Now I wanted to do all I could to help him. We were particularly worried about his eyes because a local doctor had said that if he did not get eyelids urgently, he could lose his vision.
Meanwhile, the replies of doctors who we had contacted in the US began to come in. One of them, Dr John van Aalst, a paediatric
and craniofacial plastic surgeon, offered to help. “Get him to the University of North Carolina Hospital (UNC) in Chapel Hill, US, and we can see what can be done,’’ Dr John said.
We were overjoyed and immediately began making travel plans. But there was a hurdle: the cost of the surgery. We had to raise around $100,000 (Dh367,000) for the first set of surgeries to get Adam eyelids and correct his cleft palate.
I started making the arrangements and worked tirelessly telling Adam’s story through social media, word of mouth, and two TV news reports to raise the amount through donations. In less than a week, we got a total of $147,000, which was just incredible.
A life-changing trip
On November 3, we set off with Adam to the US. There were some people at the Delhi airport, from where we flew out, who kept staring at Adam and at us. But that didn’t worry us. We were on our way to treat our baby and that was all that mattered.
Another surgeon at the hospital – UNC Hospital sinus surgeon Dr Brent Senior – was kind enough to put us up at his house, so we had somewhere to stay for free.
Adam needed eyelids made for him. He had all the muscles and nerves, but was lacking the skin. Through extensive surgery and skin grafts from his thighs, doctors were able to give him a set of eyelids in a four-hour-long operation.
He also needed a tracheotomy to help him breathe, and facial surgery.
Prior to this, Adam’s eyes were open for six weeks straight and had to be moistened with a gel every hour. So the most important thing was for him to learn to shut his new eyelids so they’d lubricate on their own and be protected from bright lights.
“We are very hopeful for Adam,’’ said one of his surgeons at UNC after the operation. “He has overcome each milestone, and that’s very encouraging for his future.’’
Adam’s eyes were closed and bandaged after surgery for almost a week so they could heal. He was not crying as much as before, which made us think he was more comfortable. But now there was another problem. Adults could have their eyes shut for 20 years, reopen them, and their vision would not change. But with a baby it is different. They require some sort of visual stimulation almost daily otherwise they will begin to lose their sight, doctors told us.
So it was a delicate balancing act; Adam needed his eyes to rest, heal and lubricate, but he also needed some visual stimulation to ensure he did not lose his vision. For this, doctors made a tiny slit underneath his bandages so he could open his eyes a tiny bit and a little light could enter to stimulate his optic nerves.
One of the doctors also advised that Adam needed more than just plain white light for recovery. We didn’t know what to do about this. And then one day, as Raja was holding him near the Christmas tree, we realised Adam was pushing his head back to peer out of the little slits at the twinkling coloured lights.
“Wow,’’ Raja said. “Look at Adam. He’s moving his head and following the streaming lights.’’ They were coloured and just the answer.
We immediately went out and bought more twinkling lights, which we strung up everywhere, even over Adam’s bed.
For a few hours every day when the bandages were removed, Adam would stare at the lights, fascinated. It was absolutely amazing once the bandages came off permanently a week after the surgery, and Adam reached out and touched the lights.
Looking forward to Christmas
Adam has since had 15 surgeries including a few more eye surgeries. He now has eyelids that he can open and close, although he does not yet blink with the involuntary regularity most people do.
Doctors have separated his legs, which were fused, and have constructed an upper lip.
In January, four months after Adam was born, we had a pleasant surprise as we found out I was pregnant.
Elliot was born a year after Adam, in September 2012, and it is a joy to see them both together – devoted little brothers.
Adam is full of energy, he squabbles with his brother, and he is like any other little boy. I love them both equally.
From what doctors can see so far, Adam is developing normally for his age, despite all that he has gone through.
He just got glasses, which he will need to wear all his life as he is nearsighted and has astigmatism. But I am just thankful he can see.
He will need nose reconstruction in a few years, and then prosthetic legs when he is older, but at the moment we are just amazed at how far he has come.
He does not have difficulties breathing because he has a tracheostomy tube that allows him to breathe more easily following his facial surgeries, but this is a temporary measure.
He is able to wear a valve over his trach that lets him start making sounds so I am hopeful he will start speaking soon.
Every mother loves the magic of the festive season but I can’t wait to decorate the house with fairy lights. This Christmas, when we are cuddled up as a family and gazing at those twinkling lights, I will remember how they saved my eldest son’s eyesight.