Surgery for Tethered Spinal Cord and Lipomas: Eva’s Story

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When Eva was born, the lump on her back was easy to miss — it was small, about the size of a quarter.

Several doctors told her parents, Elizabeth and Emmanuel, that the lump would go away on its own. But it continued to grow — and by the time Eva was 8 months old, it was the size of a grapefruit.

Eva smiling Eva, thriving after multiple surgeries “We were very nervous because this thing that had been undiagnosed for so long had grown so much,” says Elizabeth.

At the urging of Elizabeth’s father, and after doing a lot of research to find the best options for their daughter, Elizabeth and Emmanuel brought Eva to Children’s Hospital of Philadelphia (CHOP).

Finding answers at last

At CHOP, the couple met with pediatric neurosurgeon Shih-Shan Lang Chen, MD, who immediately recommended an MRI. Elizabeth and Emmanuel were grateful that she was acting so quickly to find answers.

“She gave us such relief at that first meeting,” says Elizabeth. “We were really impressed with her efficiency and knowledge.”

After the MRI, Dr. Chen told Elizabeth and Emmanuel that the growing lump on Eva’s back was a lipoma, a benign tumor made of fatty tissue. The MRI also revealed that Eva had lipomas on the end of her tail bone and on her left lower back, as well as a tethered spinal cord. This is a condition in which the spinal cord is attached to the spinal column instead of moving freely inside it. As children with tethered spinal cords grow, they often develop neurological problems and nerve damage. Sometimes, they are unable to walk.

Dr. Chen recommended that Eva have surgery to remove the lipomas and release her tethered spinal cord. Elizabeth and Emmanuel were nervous, but they trusted Dr. Chen and knew she would take good care of their daughter.

“Dr. Chen is brilliant, and she worked extremely hard to make sure Eva was in the best hands,” says Elizabeth.

Surgery to remove lipomas and free a tethered spinal cord

On Oct. 18, 2017, 10-month-old Eva was taken to an operating room at Children’s Hospital of Philadelphia, where Dr. Chen performed surgery to free Eva’s spinal cord, and Jesse Taylor, MD, Chief of the Division of Plastic and Reconstructive Surgery, removed two of the lipomas. Because Eva was so young, Dr. Taylor wanted to give her body several months to recover before he removed the third.

The 3 1/2-hour surgery went smoothly, and after two days at CHOP, Eva went home.

“She bounced back right away,” says Elizabeth. “She was back to her normal self very quickly.”

Follow-up care and a second surgery

Over the next nine months, Eva returned to CHOP for several follow-up visits, and her family spoke to Dr. Taylor often about the plans for her second surgery.

“Dr. Taylor took great care of us and was extremely welcoming to both of Eva's grandmothers when they came to her appointments. He made us feel like we were priorities,” Elizabeth says. “He's one of those people you feel like you've known for years.”

In August 2018, Eva had surgery with Dr. Taylor to remove the remaining lipoma. She went home the same day, but the next six weeks were difficult: Eva caught a stomach bug and developed a fever, and she needed several procedures to drain fluid that had built up at her surgery site.

Despite these challenges, Eva, now 2 and a proud big sister to Ella, 11 months, is thriving. “She walked at 11 months, and she talks like a 3- or 4-year-old!” Elizabeth says.

Elizabeth and Emmanuel are grateful to the team at CHOP for the amazing care they provided — and for the compassion they showed to their entire family during an incredibly stressful time.

“CHOP is a beautiful and special place,” Elizabeth says. “We always say this was like a blessing in disguise because we got to know so many amazing people.”

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