Amazing Things: John Sarcona

“John’s spine is bending by the hour.”

John Sarcona’s parents were in shock upon hearing the doctor’s words. They sat in the hospital exam room in November 2016 as Dr. Lawrence Lenke, a world-renowned spinal surgeon at NewYork-Presbyterian, made it clear: Their son John’s life was in danger.

“We expected to go to the ER that day — I never expected that my son was dying,” says Joanne, John’s mom, still shaken thinking back to that chilly evening.

For years, John, then 16, had battled extreme scoliosis, an abnormal side-to-side curvature, and severe thoracic kyphosis, an abnormal forward curvature of the upper spine. A spinal surgery three weeks earlier had left him in considerable pain. But even more urgently, he was struggling to breathe and could hardly walk across the room.

John’s bending spine was crushing his internal organs, including his lungs, which affected his breathing and his stomach, which forced John to vomit everything he ate. Adding to his difficulties, the incisions from his previous surgery still hadn’t healed and his immune system was beginning to shut down.

“If they had waited a few more weeks to come to the hospital, John wouldn’t be here,” says Dr. Lenke, surgeon-in-chief and chief of spinal deformity surgery at NewYork-Presbyterian Och Spine Hospital. “John’s kyphosis was one of the most severe and most challenging I’ve ever treated.”

Meeting with Dr. Lenke that November was the culmination of a long journey. A decade earlier, when John was around 5, his scoliosis was diagnosed. Meeting with a local orthopedist in Long Island, Joanne and her then-husband Michael, John’s father, could see from his X-rays that the degree of curvature was located in John’s mid-thoracic (upper back) and cervical (neck) spine. A normal spine has slight curvatures ranging from 20 to 60 degrees throughout the body. In John’s case, his curvature was past the 80-degree mark. To stop the curve from progressing, the orthopedist recommended that John get fitted for a brace, one that would wrap around his whole torso, front and back.

“We were basically told that John should wear the brace for 18 hours every day,” says Joanne.

The brace, made of hard plastic, had to be strapped extremely tight.

“I didn’t like it at all when I was little,” John, now 19, recalls. “It was very restrictive, really hot and itchy.”

“I used to hate putting it on him,” says Joanne. “He was such a little tyke. All the time, he’d ask, ‘Can I take it off, Mommy?’ when he’d go play with his brother or friends or when he was tired of wearing it all day. We thought it was only going to be for a short period of time and then it would be over.”

When John turned 7, he experienced his first real growth spurt. His scoliosis was getting worse, even while he wore the brace every day. It was nearing 92 degrees of curvature and, according to Joanne, beginning to resemble the curve of a small question mark. The Sarconas were advised by their orthopedist to seek out a spine specialist.

“We met with half a dozen specialists and spinal surgeons all over New York and did a ton of research,” says Joanne. (It would be years before Dr. Lenke moved to New York in 2015 to open a hospital devoted to world-class spine care, now known as NewYork-Presbyterian Och Spine Hospital.) “Each one had a different idea of how to treat John. It was overwhelming.”

Some surgeons wanted to put John in halo traction, a device that holds the head and neck in place to immobilize the spine. Others wanted to perform spinal fusion, a surgery that essentially welds sections of the spine together, stopping the spine’s curvature (and the patient’s growth if they’re young) in its tracks, which meant John would live with a significantly shortened torso the rest of his life.

But one doctor offered more than just hope. Instead of fusing the spine and stunting John’s growth, he wanted to try to lengthen his spine, which would mean surgically inserting metal rods first, then lengthening those rods every six months. The plan was to lengthen and straighten John’s spine while his body continued growing.

Shortly thereafter, in 2007, John had his first of what would be 16 surgeries during which multiple metal rods were inserted from the base of his cervical (upper) spine to his lumbar (lower) spine.

“That’s when I started to realize what scoliosis really was and what made me different from other kids,” says John.

Every six months, John had more rods surgically adjusted to lengthen his spine. It became the family’s new normal. After surgery, John would recover for a few weeks, then go back to his usual routine: school, practicing guitar, and playing basketball and golf with friends.

“Some surgeries were worse than others,” says Joanne. “Some years, more surgeries were needed because the rods needed maintenance.”

“I’d tell my friends that I was having surgery,” John recalls. “They’d come to the hospital to visit, or they’d come over to the house and watch baseball with me. With each one, I had the mindset of let’s just take it how it goes and try and move forward, but it was tough because the future was kind of uncertain. I always pushed myself to not let it take over my life. I knew eventually something would have to help.”

Luckily, John had a supportive network of friends and family, especially his mom. “She was always there, always researching, talking to anyone she could, and just trying to find an answer.”

“It’s surreal to think of how many [surgeries] actually happened,” says Joanne. “Looking back, we were so hopeful that the next surgery would be the last.”

From 2007 to 2013, John had 14 surgeries — to insert and maintain the rods as John grew — and his scoliosis finally seemed to stabilize. The Sarconas thought the worst was behind them.

But that hope was short-lived.

“As the years went on, we started to notice a gradual roundness forming on John’s upper back,” says Joanne. “It started to really take off when he turned 13.”

“I was having trouble breathing,” John adds, “and even walking through town with my friends, I’d be out of breath.”

It was the beginning of progressive thoracic kyphosis, when the spine curves back and outward in a C-shape. Everyone has some degree of thoracic kyphosis, but with increased progression, and, depending on the severity, it can lead to breathing problems, pressure on the spinal cord, compression of the body’s organs, and limited physical functions such as weakened back muscles and pain when upright or sitting.

In John’s case, as the kyphosis became more pronounced, the rods in his spine — placed there to manage the scoliosis — began to break. With all the surgeries John had already undergone, very little tissue and muscle and few tendons remained around his spine, making surgical closures more difficult as time went on.

One surgery in particular was extremely difficult, and ended with John’s surgeon admitting that John’s spine was curving at too quick a pace to make any headway, recalls Joanne.

“We didn’t know what to do or who to turn to,” she says. “I was praying for a miracle.”

A few months later, in the fall of 2016, Joanne was doing laundry when she spotted blood on the back of John’s white T-shirt.

John was at a Mets game with his dad. When they arrived home, Joanne, panicked, immediately asked John to pull up his shirt.

“When I saw his back, I just thought, ‘Oh, my dear God.’”

The metal rods were protruding out of his spine and piercing the skin in six places. “They were black and looked like tumors,” she says. Some had started to become infected.

Another surgery was scheduled immediately. John’s surgeon explained that the rods weren’t doing anything to help anymore and had to be taken out. The rods were removed, leaving no replacements.

“That time I was in a lot of pain,” says John. “Normally, after two or three weeks I start getting out of bed, but we didn’t really see any of that progress happening and the incisions weren’t healing. I was sick all the time. I wasn’t holding food down. Going up the stairs, I’d be out of breath.”

Recovering at home, John ran out of pain medication within a week, something that had never happened after all his previous surgeries. A spirometer, an instrument that measures the air capacity of the lungs, showed that John’s oxygen levels were decreasing. Joanne knew something was terribly wrong.

She packed up the car and called their doctor.

“I told him about John’s oxygen levels going down and that we were on our way to our local ER,” says Joanne.

His response surprised her. He urged them not to go to their local ER, but instead to go to NewYork-Presbyterian and see Dr. Lenke.

“That was hard for me. All these years, we’ve had the same doctor,” says Joanne, “and now we’re told to go see someone completely new.”

That advice would save John’s life.

“When I met with John and his parents, it was evident that we had to start treatment immediately,” says Dr. Lenke. “His chin was heading towards his chest and his whole upper spine was collapsing onto his heart and lungs.”

Dr. Lenke explained that John needed vertebral column resection (VCR) surgery, an extensive procedure that many experts in the field consider a last resort, requiring complete reconstruction of the spine. Joanne had read about it but was repeatedly warned that it came with a definite risk of paralysis from the neck down.

“John’s kyphosis was severely angled — over 140 degrees of curvature in the end,” says Dr. Lenke. “His situation was only going to get worse. I looked at his mom and dad, and I just said, ‘You have to trust me. This is my area of expertise and I’m optimistic that we can help him, but, unfortunately, your son doesn’t have a lot of other options.’”

Before surgery was feasible, John needed to regain his strength. Dr. Lenke’s team sprang into action, preparing a room at NewYork-Presbyterian Morgan Stanley Children’s Hospital, where he would be treated, and placing John in halo traction to stabilize and lengthen his spine so that weight and pressure could be taken off his lungs and spinal cord. Various departments — respiratory therapy, nursing, physical therapy, and nutrition, among others — each played a vital role in preparing him for surgery.

“I was able to breathe better instantly,” says John. “My throat felt better, my neck felt like it was getting longer. It was amazing.”

After six weeks in the hospital, John’s neck and spine lengthened, his incisions from his previous surgery healed, and he gained nearly 10 pounds.

“He still needed a very complex and risky surgery,” says Dr. Lenke, “but at least there were some health improvements that made this type of surgery possible.”

To keep his spirits lifted, John’s medical team and the hospital’s Child Life Department kept him busy with physical therapy, activities, visitors, art therapy, and more.

“The whole team became like a family to me,” says John. “I felt really special. They made it go by so much faster.”

“There was so much encouragement from everyone,” says Joanne. “The day before surgery, all of John’s nurses and Child Life planned a surprise party for us to celebrate all the progress he’d made. I was just blown away.”

John’s surgery began a little after 9 a.m. December 8, 2016. His spine needed to be separated into two sections, realigned, then placed back together.

“What makes this a very risky operation is that the spinal cord runs down the center, so we have to do this very carefully, obviously, keeping the spinal cord intact,” he says.

All John’s family could do was wait.

“With every surgery, I find a quiet place and go inward,” says Joanne, stressing that her faith has always been a vital companion. “I can be in the world, but I’m not here. I’m really in the OR with John.”

Finally, after 13 hours, the surgery was over.

“John’s surgery took longer than most VCR surgeries,” Dr. Lenke explains, “because his kyphosis was located in the most sensitive part of the spinal cord, where the blood supply is very thin and very susceptible, and because his previous surgeries had distorted his anatomy, which made it tougher.”

John spent the next few days in intensive care, where he was intubated and monitored. By day three, “he was out of bed, standing up, and walking,” says Dr. Lenke. “He recovered extremely well. But he also had a great attitude, and that certainly helps.”

“The physical therapist had me move my arms, my legs, walk across the room,” explains John. “I had to take things really slow, but everything felt new, like I had a new body. It felt so different — in a good way.”

“Dr. Lenke saved my son’s life,” says Joanne. “He is the most brilliant man and truly has found his calling in life. There are not enough words to describe how blessed I feel that we found him. We found the miracle that John and I were looking for.”

Just seven days after the surgery, John was able to leave the hospital and continue physical therapy at home. He was homeschooled the rest of his junior year to allow for a smooth recovery, with the focus on gaining weight and getting stronger.

Two years have passed, and John hasn’t needed additional surgeries. He goes to physical therapy twice a week and sees Dr. Lenke about every six months for checkups. In the years since his surgery, John can now bike, golf, and play basketball — activities that were once nearly impossible. In May, John, who now stands six inches taller, walked across the stage at his high school graduation. He attended his senior prom and had a tuxedo custom-fitted.

“I remember looking in the mirror and thinking, ‘Wow, is that really me?’” he recalls. “It felt good to see myself standing up so straight.”

Dr. Lenke is just as thrilled with John’s progress.

“To see how well he’s done, to see that he can lead a very normal life after coming in with a condition that was almost fatal if not treated, it really puts your whole life into perspective,” Dr. Lenke says. “I’m just honored to be able to give him his health back.”

“I’m most excited about moving on,” says John, “and not having to constantly think about the next surgery in a couple months. … Now I get to feel like a normal kid. I’m focusing on getting stronger and going to college. Now is the time I can focus on school and just be at the same level as everyone else. It’s exciting.”

In September, John began his first semester at Nassau Community College.

“Seeing him go to prom, walk across the stage at graduation, his beautiful golf swing, going to college … my heart just breaks open,” says Joanne. “It’s just amazing. The answer for John was always there with Dr. Lenke. I can’t thank him and everyone enough. From the girls in the hospital gift shop to Child Life and his nurses, to the residents and fellows. I love all of them so much.”

Learn more about NewYork-Presbyterian’s integrated spine care and services.