For kids with cerebral palsy, removing anxiety from trips to the doctor
Eleven-year-old Scarlett Ferguson is an actress who enjoys playing make-believe, swimming and hanging out with her friends.
Her doctor, Rachel Thompson, MD, describes her as sweet, spunky and intelligent.
“She embodies what you would want if you had a daughter – she is kind and independent,” says Dr. Thompson, who is the director of the Center for Cerebral Palsy at UCLA/Orthopaedic Institute for Children.
When Dr. Thompson first met Ferguson, she primarily used a wheelchair for mobility, and her hips were coming out of their sockets – something for which children with cerebral palsy are at risk.
Dr. Thompson discussed the condition with Ferguson’s family and agreed on surgery to put her hips back into socket, lengthen her hamstrings and straighten out her knees, which were becoming more flexed, limiting her ability to stand independently.
“After her first surgery, she had a lot of anxiety and a lot of fear moving her legs afterward. I think a lot of it had to do with the fact that she just didn't know what to expect,” Dr. Thompson says.
“Part of her having so much anxiety got me thinking about how we can help patients – before going into the OR all the way to recovery – go through surgery without that anxiety and without that fear. She really inspired us to think about how we can do that better.”
Cerebral palsy is a developmental disorder of posture and movement caused by an injury to the brain that occurs during early brain development, shortly after birth or during infancy and up to age 2.
“The motor problems that we most commonly see are spasticity – tightness in the muscles – and difficulty with selective motor control. What that means is the brain has a hard time telling muscles to move one at a time and has a hard time coordinating the muscles,” Dr. Thompson says.
This is why, she says, children and adults with cerebral palsy sometimes have a hard time walking or organizing the way that their mouth moves, or using their hands for fine motor skills.
For some children, surgery can improve mobility, motor function and quality of life. Because cerebral palsy can affect multiple muscle groups and joints, “multilevel” surgery, which addresses multiple areas of difficulty in one surgery, may be recommended.
But the anxiety of facing one surgery, let alone multiple, can have a very real impact, says Dr. Thompson. Studies have shown that children with greater preoperative anxiety experience more pain and are more likely to consume more pain medications postoperatively. They exhibit high rates of postoperative anxiety, sleep disturbance and delirium.
If anxiety goes unaddressed, data show, it can manifest in interactions with medical professionals and impact recovery.
In an effort to improve outcomes and the experience for children and their families, Dr. Thompson and her colleagues conducted a study to determine if managing pre-surgery expectations through more education and improved pre-operative communication could improve post-surgery satisfaction and decrease post-operative pain.
“We found that higher anxiety immediately before surgery is directly correlated to postoperative pain and use of narcotics,” she says. “That tells us that if we actually intervened on that pre-surgery anxiety, we might be able to improve outcomes.”
These findings were the motivation for Dr. Thompson to create the Surgical Preparedness Program, which provides children and their families with preoperative education in the form of a video and handouts.
“It's something that we don't talk about a lot, but we know that children do tend to have anxiety around any health care procedures or surgeries that they're going to have,” says Dr. Thompson. “It's normal to have this anxiety and it should be expected – but every procedure, every trip to UCLA, every trip to the doctor does not have to be an anxiety-provoking event.”
By normalizing surgery and providing thorough education, Dr. Thompson aims to decrease anxiety, decrease postoperative pain and allow children to have confidence in their medical providers and in themselves.
Starring in the Surgical Preparedness video is Ferguson, who shares her experience at UCLA for the sake of her peers.
“She very much fights for inclusivity in the community and that's something that you don't see much at her young age,” Dr. Thompson says.
Ferguson says one of the things she loves about Dr. Thompson is that she takes her time with her.
“She doesn't talk about me, she talks to me,” Ferguson says of Dr. Thompson. “She talks to me like a person. She explains how the surgeries will work so that I don't feel as uncomfortable when I go into the operation room. She also takes good care of me.”
In addition, Ferguson says the Child Life Specialists at UCLA Health make her feel extra comfortable prior to surgery by staying with her until she falls asleep so she “doesn’t feel alone.”
“Then after the surgery, they bring in music specialists and they play my favorite songs. They bring me toys, they play games and they make me feel comfortable,” Ferguson says.
Dr. Thompson says she and her team aim to talk to the child and their family about each detail of the surgical process – from where they will go when they arrive, to whom they will meet, if they’ll get an IV and what to expect postoperatively.
“We try to give them a timeline of when we think they're going to be 50% better, 90% better and 110% better, so that families leave our clinic preoperatively without the panic that they came in with,” Dr. Thompson says. “We want them to come to the day of surgery feeling like they're ready and know exactly what's going to happen. There's not going to be any surprises.”
Keri Ferguson, Scarlett’s mother, says she appreciates that Dr. Thompson doesn’t “sugarcoat anything” either.
“I’ve been a nurse for 16 years and that’s allowed me to connect with physicians in a different way,” she says. “Dr. Thompson does a really good job of explaining everything, both to Scarlett and to myself. She keeps the conversation real and honest, which as a parent and a nurse, I very much appreciate.”
Since meeting Dr. Thompson, Ferguson has had three surgeries – one to reconstruct her hips, pelvis, and knees, one to rotate her femurs, and one to fix a broken plate in her leg.
The last surgery was an emergent one due to her right femur bone being osteoporotic, the density of the bone brittle and weak.
“Dr. Thompson did her best to work with the bone but the femur bone was very soft and didn't accept the hardware,” says Keri Ferguson. “Six days after that surgery, her bone rejected the hardware, sort of spit it out, and her leg broke in half. We went in for emergency surgery the next day.”
Scarlett had been working for Disney and was scheduled to film two weeks after the initial surgery.
“She had been preparing herself and had the wardrobe already and was very excited,” Keri Ferguson says.
Dr. Thompson knew Ferguson was filming some princess scenes and wanted her cast to match her outfit, thinking her favorite colors, pink or purple, might work. She called her mom from the operating room, asking which color she preferred.
“I was like, ‘Oh my gosh, I am so glad you called me! Pink and purple do not work. Please don't put pink and purple on her,” Keri. Ferguson recalls.
One of the major costumes Ferguson was going to film with was a Cinderella gown, which was blue.
“Dr. Thompson not only had put this really sweet blue cast on that matched her gown perfectly, but she also took white pieces and cut out hearts and put hearts on her cast. She even put one at the bottom of her foot because her foot was going to be showing on camera,” Keri Ferguson says.
“It really was very sweet that she had that extra care and compassion and took the time to consider Scarlett, her needs and her work as an actor. It just made it really special, personal and fun.”
For every surgery, steps have been taken to reduce anxiety as much as possible – a level of attention and care unmatched by other health systems, says Keri Ferguson.
“I have referred many friends to UCLA Health for cerebral palsy care, and even just any type of chronic illness or rare disease care, because I have had such wonderful experiences compared to a couple of other health systems that we've been patients of in the past,” Keri Ferguson says. “I really feel that UCLA goes out of their way to make sure that all of our concerns are addressed, that all of our needs are met. And if they're not, they fix it and they take care of it, which is pretty special. We receive high-quality, personalized and professional care every time we go to UCLA providers.”
With the Surgical Preparedness Program, Dr. Thompson’s hope is that other children and families will feel as prepared and confident as the Fergusons, and that by sharing Scarlett’s experience, other children will feel at ease.
“(The video) is something that parents and kids can watch together on their own time, where they're comfortable at home. Kids will have an opportunity to ask their parents questions and as part of that, we have all of the written information to go to parents with graphics to explain what surgery looks like,” Dr. Thompson says.
“We're really hoping that this is a first step to try to treat the whole child, even in surgical specialties.”
Learn more about the Surgical Preparedness Program and the Center for Cerebral Palsy at UCLA/Orthopaedic Institute for Children.