Pushing past the pain: Morgan’s journey with spina bifida

Dr. Warf with Morgan, who has spina bifida.
“Be glad you can use your legs now. You might not always be able to.”

That’s what Morgan Gautreau was told by a neurosurgeon in Alabama six years ago, one of many doctors she had seen seeking a solution for her nearly constant back pain caused by a tethered spinal cord, a condition where the spinal cord is attached to tissue around the spine and can’t move freely within the spinal canal. Morgan’s tethered cord was due to spina bifida occulta, a type of neural tube defect where the spinal column doesn’t develop properly.

Luckily, she and her family didn’t take his words to heart, but kept looking for help.

Early surgeries

Morgan’s journey with back pain began when she was in fourth grade. “I was at a Louisiana State University game and I realized my back was hurting. It just came out of the blue,” Morgan explains. “It hurt for a whole year before I finally had the first surgery.”

By fifth grade, Morgan had already had two untethering surgeries near her home in New Orleans. After the second, her back started hurting again, but her surgeon said he couldn’t do anything else. That’s when the family started reaching out to other specialists.

“We contacted a bunch of different hospitals but nobody could really do anything for me,” says Morgan.

After doing some online research, Morgan’s mom Tammy reached out to Dr. Benjamin Warf, director of Neonatal and Congenital Anomaly Neurosurgery and a surgeon at the Spina Bifida and Spinal Cord Conditions Center at Boston Children’s Hospital.

“They got back to me right away and were very attentive,” says Tammy. Two weeks later, Morgan traveled from her home in Louisiana to have surgery with Warf in Boston.

Getting answers, finding relief

Warf diagnosed Morgan with recurrent tethering of the spinal cord.

“After her first surgery for tethered spinal cord, she developed scar tissue that bound up the end of the spinal cord again, putting tension on it and causing the pain,” explains Warf. “Each time the cord has been untethered from scar tissue, it has reattached in such a way as to create tension again as she grows. It is very unusual for this to recur so many times.”

Now 17, Morgan has had eight surgeries for symptomatic retethering of her spinal cord, experiencing complete relief each time. She hopes she will stop needing surgery when she reaches adulthood.

Morgan in the hospital for spina bifida surgery
Morgan with one of her favorite caregivers, Morgan Dolby.

A relationship built on trust

Six of her surgeries have been with Warf. Over the years, the two have developed a special relationship.

“Without him, I wouldn’t be where I am today,” says Morgan. Not only does Morgan still have the use of her legs, but she also has longer periods where she is pain free.

It’s still not clear why Morgan’s spine continues to tether. But she knows she can count on Warf to treat her when it does happen.

“Because it’s happened so many times, she knows exactly what it is,” says Tammy. “Dr. Warf absolutely believes and trusts in her. To come here and have everyone believe her and back her up medically has been a whole different experience for us.”

Because Morgan has had so many untethering surgeries, Warf has started to discuss the possibility of other treatment options if Morgan’s spine continues to tether after her teen years.

“We’re not ready to think about other options just yet, but Dr. Warf is working with us on other possibilities should we need them,” says Tammy.

In addition to her back pain, Morgan has also had some bladder and kidney issues related to her spina bifida. She and Tammy appreciate the coordinated care she gets through the Spina Bifida Center. Morgan currently sees Dr. Carlos Estrada, a urologist and director of the Spina Bifida Center, and Dr. Michelle Baum, a nephrologist. She’s also seen Dr. Bartley Cilento for kidney stones as well as various other specialists over the years. Rebecca Sherlock, nurse practitioner and clinical coordinator for the center, helps schedule all of Morgan’s visits during her trips to Boston.

“We like everybody here; they’re all so nice,” says Morgan.

The Gautreau family poses for a photo
The Gautreau Family: From left, Myles, Madeline, Tammy, Morgan and Derek

Taking care of each other

While Morgan is quiet when talking about herself, she lights up when talking about her family and her devotion to them is clear. Morgan’s siblings, 8-year-old Madeline and 13-year-old Myles, are constant companions when she’s home and Morgan attends all of Myles’ many sports games.

Despite Morgan’s frequent bouts with pain and trips to Boston for surgery, her parents try to make sure that her life is as normal as possible.

“After surgery she always does great and bounces back very quickly,” says Tammy. “She has to take advantage of the good days when she has them, so we don’t sit and sulk. We go on with our lives. We deal.”

Like any teenage girl, she enjoys shopping and hanging out with her friends and family. Recently, Morgan attended her junior prom and is looking forward to her senior year. She is determined to have a surgery-free last year of high school. Once Morgan graduates, she hopes to have the typical college experience.

Morgan stands with Dr. Warf
Morgan and Dr. Warf

Paying it back to a special doctor

Morgan is also devoted to Warf. For four years in a row, Morgan raised money for Warf’s work with children in Uganda. During her sophomore year, Morgan and her family held a fundraiser in their backyard with food, raffles and activities. The normally quiet teen has even given speeches about her condition to the entire student body at her school to gain their support for her fundraisers.

Morgan’s desire to help other children in need will continue beyond fundraising. She hopes to work in the medical field, making sure other children are treated with the same warmth and compassion she’s received from Warf and her other doctors at Boston Children’s.

“That’s just who Morgan is,” says Tammy. “She’s a good kid. She never gives up and she’s always encouraging other people. Even when she’s in pain, she’s always positive. We’re proud of her.”

Learn more about the Spina Bifida Center.