Mason’s Journey - From Chronic Pain to a Life of Freedom at Oklahoma Children’s Hospital OU Health

Samantha Witt still gets teary-eyed when she remembers how much pain her young son Mason was in from the day he was born. Today, those tears are mixed with relief when she talks about the life-changing care he received at Oklahoma Children’s Hospital OU Health in Oklahoma City.

Born with multiple congenital heart defects and a condition called spinal cord tethering, Mason underwent numerous invasive surgeries and years of pain that kept the otherwise outgoing boy from enjoying childhood. Samantha worried her son, one of five boys, would never be able to live a normal life or would be confined to a wheelchair for the rest of his life.

Thanks to an innovative and sophisticated procedure offered through Oklahoma Children’s Hospital, Mason not only lives a normal life now, but one that may never include another invasive surgery or uncontrolled pain again.

A Mother and Son’s Emotional Journey

Mason was born on July 16, 2014, in Geneva, Illinois, a suburb of Chicago. Samantha had no indication of any medical issues despite intensive testing during her pregnancy due to gestational diabetes. Mason was the only one of Samantha’s five children with whom she had gestational diabetes, an odd coincidence that she fondly refers to as him being her “lucky one.”

The first sign of trouble appeared a day after Mason’s birth when doctors detected a slight murmur. However, it was not until later that the full extent of Mason’s health challenges came to light. He was diagnosed with numerous health issues, including multiple congenital heart defects. Only days old, Mason had to have heart surgery.

While recovering from the cardiac procedure, the Witt family learned that Mason also had tethered spinal cord with lipomyelomeningocele. Tethered spinal cord syndrome is a condition where the spinal cord is stretched, causing pain and other symptoms. Traditional treatment involves cutting away scar tissue to relieve tension on the spinal cord. However, this often leads to more scarring and the need for repeated surgeries.

“The ultrasound showed the tethered cord, but they said, ‘Let’s get him through the recovery of (heart surgery) first, but you will eventually need to go for more testing and possible surgery,” Samantha said. “Looking back now, that's when I developed PTSD, because I didn’t know how much more I could take or how much more my kid could go through. He was 7 days old and he had chest tubes, and they were now telling me he would have to have his back opened up. I kept saying, ‘It’s not fair! God, why is this happening to us?’”

Mason’s Medical Challenges

At 8 months old, Mason underwent his first spinal untethering surgery, also known as tethered cord release surgery. However, after the surgery, Mason lost control, at least temporarily, of his bladder and bowel functions. Thankfully, his bladder function returned, but his bowel function never did.

Despite initial surgeries to address his heart condition and spinal cord tethering, Mason faced ongoing challenges with mobility, pain and neurogenic bowel, meaning he had to have a catheter. His condition was complex, as his spinal cord was wrapped around nerves responsible for movement and feeling within a lump of fat called a lipoma, making complete untethering impossible without risking paralysis.

“He was on so many painkillers,” Samantha said. “He was in a wheelchair.”

After hearing less than ideal options for Mason’s condition, Samantha decided to seek more opinions.

“I came home and had my day or two of a pity party with hysterical tears,” she said. “On day three of crying, I said, ‘No, we’re not doing this. I don’t care if I have to go to 345 doctors - this cannot be our only choice.”

The Power of Community and Expertise

Now living in Tennessee, Samantha’s search led her from Chicago to Florida and even Rhode Island, but every specialist told her the same news. Spinal cord tethering surgery was the only option, they told her, and her son would face a lifetime of surgeries. However, it was a conversation with another parent that led her to OU Health pediatric neurosurgeon and Chief of Pediatric Neurosurgery Dr. Andrew Jea, M.D., MBA, MHA, FACS, FAAP, professor in the Department of Neurosurgery at the University of Oklahoma College of Medicine.

“I belong to an online support group, and I just reached out for help. A mom contacted me and asked, ‘Have you ever heard of Dr. Jea?’ She called me and we spent three hours on the phone,” said Samantha.

That conversation was a turning point in Mason’s journey. The other parent’s daughter had undergone a spinal column shortening surgery performed by Dr. Jea, which sparked hope for Samantha.

Samantha reached out to Dr. Jea’s office at Oklahoma Children’s Hospital OU Health in Oklahoma and sent Mason’s records over. Within two weeks, she got the call she was waiting for, asking the family to come to Oklahoma to see Dr. Jea in person.

“We walked into that appointment not expecting to hear anything new than what we were already told. But within the first five minutes of Dr. Jea walking in, I knew that he was the one,” Samantha said. “He treated Mason like he was his own child. He didn't talk to us like a typical doctor. You could tell he genuinely was listening to us, and he wanted to help.”

This immediate connection and trust in Dr. Jea marked the beginning of a new chapter in their healthcare journey, one filled with hope and optimism.

Innovative Care at Oklahoma Children’s Hospital

Dr. Jea proposed a spinal column shortening surgery that could potentially halt the progression of Mason’s issues without causing further harm. Spinal column shortening is a revolutionary procedure that has transformed the lives of children like Mason.

Dr. Jea was no stranger to the challenges posed by tethered spinal cords, and he was determined to find a better way. His inspiration came from an unlikely source: engineering principles. He likened the spinal cord to a tight rubber band stretched between two points. If he could shorten the distance between those points, he could relieve tension without directly manipulating the delicate spinal cord itself. This novel approach shifted the paradigm.

Instead of cutting away scar tissue, Dr. Jea and his team focused on bone removal around the spinal cord. By creating a gap and then closing it, they effectively reduced tension. The results were astounding. Children who underwent this procedure experienced lasting relief without the need for repeat surgeries.

Dr. Jea has performed spinal column shortening procedures since 2008 for Texas Children’s Hospital, the Riley Hospital for Children and now at Oklahoma Children’s Hospital.

“We have not had to re-operate on a child that has undergone spinal column shortening,” says Dr. Jea, highlighting the stark contrast to traditional untethering surgeries, which often lead to repeated procedures.

In November 2021, at age 9, Mason received the spinal column shortening procedure at Oklahoma Children’s Hospital.

“It turned out Mason had a separate pain syndrome, Complex Regional Pain Syndrome,” Dr. Jea said. The pediatric neurosurgery team placed a spinal cord stimulator along Mason’s spine, which sends a low amplitude signal to distract the spinal cord from pain sensations.

The Transformation

The breakthrough wasn’t just medical; it was transformative. Mason went from a life of constant pain to a pain-free existence. His story became emblematic of the procedure’s success. His mother is so pleased with the care they received that they’re considering moving to Oklahoma. Mason himself is so inspired by his journey that he’s considering becoming a doctor one day.

“That spinal stimulator has been a godsend. His back pain is pretty much 90% gone,” said Samantha. “We are regulars now at Oklahoma Children’s Hospital. That's why I am making it my mission to work with OU Health, because once you see how amazing they are, you realize there is no reason other parents should be traveling to other states to get care that they can get here that is just as good, if not exceedingly better.”

OU Health is considered a high-volume center when it comes to spinal cord shortening procedures. In just 3 ½ years at OU Health, Dr. Jea has performed spinal column shortening in 10 children and nine adults from eight different states. In total, he has operated on more than 65 patients for spinal column shortening during his career while most pediatric and adult medical centers do not offer spinal column shortening at all.

Children from all over the country have received a new lease on life at Oklahoma Children’s Hospital, not just with tethered spinal cord syndrome. Oklahoma Children’s Hospital’s work is not just about relieving pain; it’s about restoring a child’s ability to have a normal childhood and a long-life expectancy.

Dr. Jea’s vision extends beyond individual cases. He sees these children as potential future leaders—scientists, astronauts, even presidents. By freeing them from pain, he unlocks their potential to shape the world.

“We’re not just treating pain; we’re shaping lives,” said Dr. Jea.

Learn more about spinal shortening and other neurosurgical advances at Oklahoma Children’s Hospital Pediatric Neurosurgery Clinic or call (405) 271-8888.