Having surgery can be scary and hard for anyone, but it can be especially hard on teens.
Former CHOC patient Sarah has firsthand knowledge of the challenges involved with an unfamiliar hospital stay, painful surgery and restrictive recovery – and now she is determined to help others through it.
17-year-old Sarah received spinal fusion surgery at CHOC to treat scoliosis, and is now inspiring others to “embrace their scar” through encouraging messages.
Sarah is a teen mentor participating in CHOC’s P.S. You’re Not Alone Mentorship Program, which originated in 2019 and is offered to all patients undergoing scoliosis surgery at CHOC’s Orthopaedic Institute.
The mentorship program – created in partnership with the CHOC’s orthopaedic, surgery, child life and nursing teams – offers support for not only the physical health of teens but their mental and emotional health as well. Each patient is paired with a formally trained mentor who successfully coped with their scoliosis surgery, and is eager to offer connection, encouragement and tips.
For Sarah, her mentor, care team and child life team made all the difference in her surgery experience at CHOC. They even helped inspire her plans for a future career.
Scoliosis diagnosis and surgery options
Sarah was first diagnosed with scoliosis at age 14 when her pediatrician noticed a curvature in her back during a routine physical. She was referred to CHOC, and Dr. Samuel Rosenfeld was scheduled to perform her spinal fusion surgery just a month later.
“The surgery was scheduled fast, which was scary, but I was also thankful for it,” says Sarah. “It gave me less time to worry.”
Sarah opted to participate in the mentorship program and was paired with a former scoliosis surgery patient.
Because Sarah’s surgery was scheduled for the summer of 2021 amidst COVID-19 restrictions, she couldn’t participate in the program’s typical in-person hospital tour with her mentor and child life specialist. Fortunately, the program was able to adapt, and Sarah received a virtual, guided tour of CHOC Hospital in Orange.
Then, she was able to meet with her mentor virtually, and they talked for about an hour.
“I was so scared, and my mentor felt like the only person that I could truly relate to,” says Sarah. “Although I had the support of my friends and family, they didn’t fully understand what I was feeling like my mentor did.”
A positive CHOC surgery experience
Sarah feared that her world was ending because of this surgery. She thought she wouldn’t be able to do sports or other activities that she previously enjoyed, and everything would be different. Sarah turned to social media to learn about the experience from other teens, but just found misinformation.
She felt so lucky to be able to talk to her mentor — someone who could offer her true, real insight.
Because of the program, Sarah felt prepared for her surgery and stay at CHOC. She received her spinal fusion surgery on Wednesday and recovered and received physical therapy at CHOC Hospital until Monday. During that time, she remembers the challenges of being unable to stand up and having to get out of bed a certain way.
“It was strange to realize that I had to think about how to move my body differently,” recalls Sarah. “I never had to think about that before.”
But even amongst the challenges, she describes her surgery experience as positive.
“Child life brought in video games for me, and my dad and I got to play together,” Sarah says. “I was treated like a queen while I was at CHOC.”
Even while still at the hospital, Sarah was so inspired by her mentor that she knew she wanted to be one too.
Finding passion in mentoring others
Sarah recovered at home for four weeks and experienced muscle spasms and back pain, but she was still determined to begin her school year with her classmates. At three months post-surgery, Sarah could participate in light exercise; at six months post-surgery, she could resume vigorous exercise.
Today, Sarah finds passion in mentoring others who are in the same situation she was in. She joins Shaylin Schutlz, child life specialist, on hospital tours, offers encouragement and describes her recovery process to her mentees so they know what to expect. She’ll even recruit her mom to answer other parents’ questions about their child’s experience.
But most of all, Sarah tries to reassure others that their worlds aren’t ending because of this surgery.
“I always try to encourage my mentees that even post-surgery, I live my life to the fullest. Maybe I can’t do backflips anymore, but I can run and do jumping jacks — I can do everything! Without pain!” says Sarah.
To other teens who may be experiencing scoliosis surgery, Sarah offers the following tips:
- Listen to your body during recovery, not your brain. If you are in pain, sit down and rest. Let yourself fully recover.
- Trust in your doctors because they want what is best for you.
- Embrace your scar. It shows how strong you are.
Most importantly, just like the program’s namesake, Sarah reminds others that they are not alone.
“The unknown can be so scary, but you are not alone,” says Sarah. “There are people to talk to who will listen to you and guide you.”
Sarah’s mentorship even extends beyond CHOC patients. She started a social media account to share her experience and connect with other teens with scoliosis around the world. She is deeply passionate about helping others.
This passion – cultivated by the P.S. You’re Not Alone Mentorship Program and the expert, compassionate care at CHOC – helped Sarah determine her future career aspirations: Nursing.
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Learn more about CHOC’s Orthopaedic and Sports Medicine Services
CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2023-24 Best Children’s Hospitals rankings and ranked in the orthopedics specialty.
