The Story of Benjamin Burton

Benjamin Burton is a bright and lively second-grader. He wrestles with his brother Josh and teases his sister, Meghan. He loves the Ravens and continually tosses a football during our conversation. He is well informed about super heroes, and when he gets bored, he snuggles with Garrett, the family’s golden retriever. But it has been a long road to get to this happy, normal point that most families take for granted.

Baby Benjamin was the third child of Chris and Kerry Burton. Although Ben’s birth was uneventful and the first moments of Ben’s life were average, things quickly took a scary turn. Blissfully unaware of what the future held, Ben’s mother, Kerry was able to hold and nurse Benjamin before he was taken away for his routine exam. Ben’s grandmother, Cathy Lundy recalls “I was aware that the baby wasn’t coming back right away and then things happened so very quickly.” The Burton family, including grandparents Cathy and Harry (Chip) Lundy were told that Benjamin had stopped breathing while sucking and although the suck-swallow-breathe incoordination in infants is not uncommon, it is an automatic ticket to the Neonatal Intensive Care Unit (NICU) for further examination. Johns Hopkins Howard County Medical Center was fortunate to have a level IIIb NICU and Dr. Tuvia Blechman, Director of the NICU, coordinated Ben’s care in the nursery, performing a standard battery of tests and assessments to determine his overall state of health. Immediately a flag was raised when one of the tests indicated that Ben was missing several ribs – in and of itself not life threatening but a potential marker for more serious conditions and more detailed assessments. Suddenly “uneventful” and “average” took a back seat on Ben’s journey.

On the third day Kerry received the call that Benjamin had more serious problems than originally anticipated. Although tests indicated that Benjamin’s heart and lungs seemed fine, there were serious issues with his spine. Whole cervical (neck) vertebrae and ribs were missing and many of the existing ones were malformed. Kerry recalls meeting with her father, Chip Lundy, and Dr. Blechman and poring over medical books and journals trying to get a handle on what was wrong with Ben. Dr. Blechman called in specialists, including a pediatric cardiologist from Hopkins who, within a day, performed an echocardiogram and gave reassuring results. More tests were ordered and more specialists contacted, including a geneticist from the University of Maryland and pediatric neurologists and pediatric orthopedic specialists from Johns Hopkins. As specific syndromes and diseases were ruled out, Kerry remembers thinking “Was he going to live? Was he going to die? We didn’t know.”  Despite the uncertainty, Kerry remembers feeling reassured. “When everything happened it was so quick. It went from a couple of missing ribs to a significant health issue and we just didn’t know what it was. Dr. Blechman was able to pull everyone and everything together so quickly.” Cathy Lundy agrees, “It alleviated many days of worry for us to have such immediate access to the specialists.” Throughout their ordeal, the Burtons and the Lundys were aware of the other families struggling through similar, difficult issues in the NICU. Ben’s father, Chris Burton says, “While we were there, Benjamin was parked next to another child who had been there for months and was finally able to go home.” “The level of care and attention from the entire staff just struck me,” Kerry says. “The NICU had a great, homey feeling with caring nurses... I mean, they really cared.”

After three days in the NICU and after all other potential health issues were ruled out, the diagnosis of cervical kyphosis was limited to Benjamin’s certical spine in his neck. With an appointment scheduled for three months later with the head of Johns Hopkins Children’s Center pediatric orthopedics, Dr. Paul David Sponseller, Benjamin was finally able to go home. Chris Burton recalled, “It was a seamless transfer in care from Howard County to Johns Hopkins. It was this, this and this and we were on our way to Hopkins. We weren’t taking duffle bags of x-rays with us; everything was already handled by Howard County.”

Kerry talks about her revelation in the NICU, “When you come so close… when you think is everything okay? Is the baby going to live…? When you don’t know what’s wrong and you are surrounded by other babies in incubators in the same situation, you can really relate to these parents. We connected as parents. We are all together in the same scary boat.”

Kerry credits their faith in helping them through and she knows that her life has forever changed. “These experiences have made the little things not so important anymore.”

Chip Lundy adds “Everyone in Howard County talks about how good the schools are, and the great libraries and parks – and they are. They are all great, but one of our greatest assets is our hospital. As a community hospital – it is in its own right one of the finest community hospitals in Maryland, but then- on top of that – we are associated with a world class hospital and we have ready access to the best specialists – which a lot of community hospitals don’t have and can’t offer.”

The family felt called to help families who were experiencing similar experiences.  A generous, historic donation was made through the Lundy Family Foundation of Columbia, Maryland, which is led by Harry L. “Chip” Lundy, Chairman of the Williamsburg Group, LLC, and his wife Cathy, and includes their children Laurie Lundy, Dianne Heeter, and Kerry Burton. Just as the NICU will always hold a special place in Benjamin’s history, the Lundy Family Neonatal Intensive Care Unit will now hold a special place in hospital history. Speaking of his family’s support of the hospital, Chip noted, “The future of our health care system primarily depends on giving back to it. We all want our hospital to be the very best it can be. After all, Howard County touches more of us than any other nonprofit. We consider it a privilege to serve others in this community by getting involved in philanthropic organizations – I think anyone would agree that by serving we get back more than we give.”

Where is Benjamin today?
For the six years following his birth, Ben was under the care of Johns Hopkins Children’s Center specialist, Dr. Paul David Sponseller, who measured his progress, assessed his condition and made plans for the surgeries that Ben would need.

Because Ben’s curvature forced his head forward and down towards his chest and because his spinal cord was unprotected, Sponseller suggested a two part surgical solution that would help straighten the spine and raise the head. The first step was the surgical insertion of a halo, or metal ring that surrounded his head and was bolted directly into his skull. The halo combined traction with steadily increasing amounts of weight – and would gently pull his head back, decompress his spine and make room in his neck for the vertebrae and special titanium rods that Sponseller would insert and fuse in a second surgery. All told, Ben would be in the special halo and vest for more than two months and stay as an inpatient at the Johns Hopkins Children’s Center for several weeks.

On August 17, 2011, Benjamin left behind his faithful Golden Retriever, Garrett, packed up his special stuffed puppy, Blueberry, and went to Johns Hopkins for the first hour-long surgery. After recovery, Ben was immediately moved to a room to begin the traction process. Traction required weights to be hung from the back of Ben’s head. Ben’s father, Chris, says, “To see Ben in such a high-tech setting, and still using traction- which seemed like a throwback to older days was pretty odd. But Sponseller explained to both parents that just five or 10 years ago, the procedure would have been much more risky. The evolution in treatment had evolved in just the short amount of time that Ben had been around.  A family friend made custom clothes that Ben could wear over his hardware, including a Ray Rice jersey. In the next two weeks following surgery, weight was gradually added to Ben’s traction, increasing from zero to fourteen pounds. And if wearing fourteen pounds on your head wasn’t enough, Baltimore experienced the strongest earthquake in 100 years on August 23, which was followed by Hurricane Irene on August 27. It was a rough patch for Ben. Despite the kind nurses and private room, the IVs, pain medications, immobility, and nausea made his stay difficult. Because he was in traction, watching television or movies was difficult so his father and grandfather rigged an iPad on the metal triangle “pull up” bar over his head which allowed him to watch videos. He could only listen to the Ravens, though, but he tuned in for each game during those days and the Ravens wins over the Chiefs, Redskins and Falcons made his stay just a bit more bearable. One morning as the resident was making his rounds, he asked Ben to stick out his tongue. There on the tip of Ben’s tongue was a tooth. Ben had lost one of his baby teeth. Kerry recalls, “When Dr. Sponseller came in an hour later and Ben was sleeping, the doctor quietly slipped a dollar under Ben’s pillow, just in case the tooth fairy would not be able to find his way into Hopkins.” 

Unfortunately, the treatment was not without problems. Ben developed a complication in the nerve to his arm and the arm lost some functionality. The amount of weight was reduced and the second surgery was delayed. “Perhaps this was just too much weight for Benjamin’s little body, his anatomy just couldn’t stretch and change that much without affecting other functions,” Kerry writes in the CaringBridge journal she kept throughout the experience. Ben returned to surgery to be fitted with a special vest that was not removable and was attached to his halo by rods that kept his neck stable until his arm improved and the second surgery could take place.

Kerry says “When I saw Benjamin in the recovery room I was surprised yet again about how much hardware you can attach to a human-body – especially a little boy who only weighs 38 pounds at best!” Ben returned home for a couple of weeks to give his arm time to recover and to gain weight. Garrett, who had been keeping his spot in the family room warm, while he was away, was glad to see him.

On Sept. 27, Ben reentered the hospital for the big surgery. Dr. Sponseller and Dr. George Jallo, Director of Pediatric Neurosurgery, operated. First, Jallo made room in Ben’s spine and then Sponseller took bone from Ben’s hip and, using titanium rods for stability, fused it to his neck. The surgery went well, but when Jallo emerged first from the surgery he told the Burtons that Ben did not have much in the way of vertebrae. “He thought it was amazing that he didn’t have physical limitations as he grew including problems with walking,” Kerry says. “I suppose I am glad that I was unaware of how unstable his neck truly was and I am so thankful that God protected Ben for all those years.” After one week in the hospital, Ben returned home for another month of recovery in the halo and vest. With the help of physical therapy, Ben learned how to balance and walk with his hardware and teachers visited the house to help him keep up with his first grade studies.

On Oct. 27, Ben returned to Hopkins to have the vest and halo removed. Kerry asks Ben, “Do you remember what the first thing was that you could do after they removed your halo and vest” and Ben grinned and said, “I could hug you!” and Kerry responded, “That’s right! For the first time in months I could feel your little arms around my neck and I could squeeze without all of that hardware in the way!”

Four days later, sans halo and vest, Ben dressed up as Dr. Benjamin Burton, Hopkins surgeon, for Halloween. Wearing scrubs, gloves and a stethoscope, Ben blended in with the other trick-or-treaters.

Ben will have further surgery in the future. The screws holding the rods in place will be loosened to allow for growth. But Ben continues to grow and progress and last winter he went skiing for the very first time!