Beacon pediatric neurosurgeon helps restore movement to 11-month-old boy after sudden and rare paralysis

Saturday mornings always have been Rowan Thomas’s favorite, playing on the floor with his parents while they enjoy their coffee together. But just before his first birthday, Lauren and Andrew Thomas woke their son one early weekend morning to find something terrifyingly wrong.

“We were expecting him to wake up happy and ready to enjoy some playtime with Andrew and I before we got the day started,” Lauren says. Their little active boy whose sweet personality could light up any room would normally be crawling all over the place.

Instead, when Lauren was changing Rowan’s diaper, she noticed his legs felt unusually limp.

“I brushed it off at first, thinking he was just groggy from waking up. But once we came downstairs and I sat him on the floor, he just toppled over. It was like his core and lower body just gave out, as if he had lost all strength.”

The questions came flooding in for both parents. Is our son paralyzed? Does he have cancer? What’s wrong with him? Why is this happening? Is he going to die? “Our hearts sank straight into our stomachs, and your mind starts spinning playing out every scenario,” Lauren says.

They rushed Rowan to the Memorial Hospital emergency room where doctors immediately began preparing him for a full body MRI. Thankfully, Rowan did not seem to be in any pain or discomfort. He was his usual happy self, excited to be hanging out with his mom and dad. But for Lauren and Andrew, the waiting had only just begun.

Racing against time

Those first 24 hours were a blur.

“When we got to the ER and they said they wanted to do a full-body MRI, I remember thinking, ‘that feels a little excessive,’ even though it was absolutely the right call,” Lauren says.

Dr. Daniel Fulkerson, pediatric neurosurgeon, Beacon Medical Group North Central Neurosurgery South Bend

The hardest part of that morning, she recalls, was watching them place an IV in Rowan while he was awake to prep for the MRI.

“Truly, everyone at Beacon was so professional and calm, and coupled with the support of our families, we felt like we were in the very best hands.”

Waiting for answers, the family learned that Dr. Daniel Fulkerson, pediatric neurosurgeon, Beacon Medical Group North Central Neurosurgery South Bend, was there to review the scans. What they didn’t know was how fortunate they were to have this level of specialized expertise so close to home.

Meanwhile, Rowan’s grandfather, Dr. Scott Thomas, was thousands of miles away when he got the call no grandparent wants to receive. Dr. Thomas, Trauma Medical Director at Memorial Hospital of South Bend, and Chief of Trauma Services for Beacon Health System, was attending the national meeting of the American College of Surgeons in San Francisco when he learned about the situation.

“I received a call from my son that my grandson could not move his legs and was being rushed to the emergency room,” Dr. Thomas recalls. “At that moment, I happened to be sitting next to the trauma medical director from Riley Hospital in Indianapolis. He reassured me by saying, ‘Your grandson is in the very best hands — Dr. Fulkerson is an extraordinary pediatric neurosurgeon.'”

An extremely rare case

Dr. Fulkerson’s review of the MRI revealed the source of Rowan‘s symptoms.

“Rowan‘s MRI showed severe compression and swelling of his spinal cord and lower part of his brainstem near the junction where the head sits on top of the spine,” says Dr. Fulkerson. This is known as a Chiari malformation, which is most often seen in older children and adults and commonly causes symptoms like headaches, numbness or eating problems.

Rowan Thomas

Rowan‘s case was extremely rare given his young age and dramatic symptoms, Dr. Fulkerson says. “In fact, only a handful of cases in the medical literature describe a similar presentation of Chiari malformation, and none are described in a child so young.”

After the MRI, while Rowan was still waking up, Dr. Fulkerson pulled the parents into a private room to share his diagnosis. For Lauren and Andrew, the moment brought an overwhelming flood of fears.

“In that moment, all you want are answers to two impossible questions: Will my child survive this? Is this terminal? And then the next thought rushes in: Will my child ever walk again?” Lauren says. Once those questions were addressed, they could finally hold onto a sense of hope.

Dr. Fulkerson explained that Rowan would need surgery right away, and their minds shifted to the practical: What will recovery look like? How long will they need to take off work?

“At the time, I don’t think we fully understood just how rare our situation was. That reality sank in over the weeks and months following surgery, as Dr. Fulkerson reached out to colleagues and it became clear how unusual it was for a Chiari malformation to present so acutely and at such a young age,” Lauren says.

“When it came to learning about the condition, we leaned heavily on the information provided by the medical team at Beacon. We intentionally avoided going down the rabbit hole of Googling, knowing we were already overwhelmed enough,” she says.

Despite the frightening diagnosis, Lauren says Dr. Fulkerson had an immediate calming presence that provided the reassurance she and Andrew desperately needed.

“You could tell he felt confident about the diagnosis and that he could handle it,” Lauren says. “He laid out the facts, presented the diagnosis and provided a lot of clarity.”

The longest days

Rowan was admitted to the pediatric intensive care unit (PICU), and the surgery was scheduled for the first thing Monday morning.

“They moved us into a room in the PICU, which was spacious and comfortable, with more than enough room for our little family of three and the many visitors who came throughout the week,” Lauren says.

The family also had access to the bright, open Beacon Children’s Hospital atrium with toys and an outdoor patio, which provided a space to get some fresh air and take a moment to regroup.

“We waited with family while Rowan was in surgery, which I believe lasted two to three hours, although honestly, I can’t remember exactly. By the time the procedure began, the reality of the situation had settled in, and we felt a real sense of confidence that it would be successful,” Lauren says. “Dr. Fulkerson is an incredible doctor, and he had the most amazing nurses and staff supporting him throughout the operation.”

Lauren and Andrew Thomas and their family today, which now includes Georgia Jane Thomas.

They worked to relieve the pressure on Rowan‘s brain and spinal cord and re-establish the normal circulation of spinal fluid through the area.

Lauren recalls that Dr. Fulkerson immediately let them know that the surgery had been successful, and Rowan did not need a shunt, which had been a possibility.

“Seeing your child hooked up to every monitor, an IV, and then being with him during the post-surgery trenches is just heart-wrenching,” Lauren says. “I will never forget the first time I saw his incision along the back of his head and neck. For such a small, innocent little child, it’s incredibly difficult to watch them go through something so traumatic at such a young age.”

Following the intricate procedure, the pediatric nurses and doctors in the PICU monitored Rowan‘s vital signs and status. Rowan remained in the PICU at Beacon Children’s Hospital for another five days.

“In the hours and days that followed, we began to see movement and strength returning to his legs,” Lauren says. “We would tickle the bottoms of his feet, just to see if there was a response or movement.”

The waiting and wondering were the hardest parts of recovery, working with Rowan to build his gross motor skills back. When will he crawl on all fours? When will he walk? Will he ever walk?

He began physical therapy and was able to return home just in time for his first birthday. Lauren and Andrew had not left the hospital since that frightening Saturday morning.

Expert care, close to home

Both parents were grateful for the entire team’s expertise and compassion. “Dr. Fulkerson is amazing,” Andrew says. “So were the nurses and the whole staff. Everyone was awesome.”

Andrew and Lauren were also surprised and relieved to receive such specialized care locally at Beacon Children’s Hospital. “I assumed he’d be taken elsewhere,” Andrew says. “It was great that we had a solution right here in South Bend. For me, that was very comforting.”

Lauren was particularly touched by the genuine care of the entire team.

“I can tell he has a really good team with him and they all genuinely like and support him,” she says. Lauren recalls that for Halloween, Dr. Fulkerson dressed up as the character Gru from “Despicable Me,” and his nurses dressed as minions. “He’s just a really good sport.”

Rowan Thomas today.

A miraculous recovery

The family received great news this summer. Rowan‘s post-operative MRI looks good. His recovery continues with weekly outpatient physical therapy, and his parents couldn’t be prouder of his progress.

Rowan turns 2 years old on Oct. 25.

He became a big brother to Georgia Jane Thomas in mid-July.

“Rowan loves being a big brother,” Lauren says, describing how he always wants to kiss his little sister and wants to keep everyone quiet when she is asleep. “It’s very tender.”

Rowan started walking in late spring to early summer this year, and his parents are continuing to work on his balance and strengthening his right side through physical therapy.

“This whole experience has crystallized what truly matters in life – family and the health of those you love,” Lauren says. “It’s so easy to take these things for granted, and coming out of this, we are left with an overwhelming sense of gratitude for both.”

Lauren says they are so grateful for the community that helped them get through this, including friends, medical professionals, bosses and coworkers. “Despite all the tears and sleepless nights, being a parent – even through challenges like this — it is the most rewarding experience, and we wouldn’t trade it for anything.”

Dr. Fulkerson reflects on Rowan‘s recovery and progress.

Dr. Scott Thomas, Trauma Director, Beacon Health System, with his grandson Rowan.

“Rowan has made significant progress and regained his strength. He recovered beautifully from the surgery and is now a happy, very active child.”

Dr. Thomas says he is grateful to say that his grandson has made a full recovery, and he can’t say enough good things about the care Rowan received.

“Within three days, Rowan was moving his legs again and beginning his recovery. Dr. Fulkerson embodies the very best of our profession — decisive, compassionate and technically brilliant,” Dr. Thomas says.

“In a moment of crisis for my family, his calm expertise and rapid intervention gave Rowan back his life,” he adds.  Beyond his surgical skill, his presence and humanity reassured us at a time when we needed it most. My family and I will be forever grateful.”