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news News Monday, May 6, 2019 Monday, May 6, 2019 12:59 AM - Monday, May 6, 2019 12:59 AM

Diagnosis of early onset scoliosis leads family to Shriners Hospitals for Children

Diagnosis of early onset scoliosis leads family to Shriners Hospitals for Children

Vanessa is the daughter of a Shriner, but it wasn’t until her own daughter was diagnosed with scoliosis that the Davis mother witnessed first-hand the excellence of her father’s lifelong cause. "My dad will be the first to say that he never hoped anyone in his family would need care at Shriners [Hospitals for Children], but now that we do, it’s been wonderful to see the amazing place that is a result of the philanthropy undertaken by Shriners," said Vanessa.

When a respiratory infection landed Ella, 3, in the emergency room of Sutter-Davis Hospital, doctors quickly ordered X-rays to screen for possible pneumonia. "When the X-rays came back, they provided a clear view of Ella's spine, and that's when I noticed a strange curve," said Vanessa.

Doctors concluded that Ella likely had early onset scoliosis, a rare condition that if left untreated can endanger the heart and lungs. They referred Ella to Shriners Hospitals for Children — Northern California.

Vanessa and her husband, Jay, followed through on the recommendation. They met with orthopaedic surgeon Joel Lerman, M.D., who explained that the incidence of idiopathic scoliosis is extremely rare in children under 4, occurring in less than two out of every 1,000 children. He also explained that in young children like Ella, body casting was a viable treatment option that could correct the curvature of the spine without invasive surgery.

Anxious to find the best medical care for their daughter, Vanessa and Jay sought a second opinion at Lucille Packard Children's Hospital at Stanford. "At Stanford, we saw an orthopaedic surgeon who had worked as a resident at one of the Shriners Hospitals. He told us how a lot of orthopaedic surgeons train at Shriners,” said Jay. “At that point, we felt really lucky to have such a world-class institution right in our backyard.”

Since then Ella has undergone four procedures at the Northern California Shriners Hospital to correct two significant curves and rotation of her spine. Ella is wearing her fourth body cast of the year under the watchful eye of Dr. Lerman, who has mastered a progressive casting procedure known as EDF (elongation, derotation, flexion).

“This is the one means we have of improving the curves in young kids without surgery. It is most effective in younger children, but we use the casting technique to treat kids with scoliosis up to age 5,” explained Dr. Lerman. “In some cases, the casting can cure the scoliosis. In all cases, it lessens the degree of the curve and allows us to effectively pursue other treatment options.”

The four- to five-pound cast is carefully placed by the orthopaedic surgeon while the child lays in traction under anesthesia. Ella must stay out of the swimming pool, bathtub, and things like sandboxes, but it has not kept her from playing on her swing set with her younger brother, Jack, or doing somersaults in her backyard.

“It’s been amazing watching her,” said Jay. “She is so resilient. There are so many ‘little kid’ activities she’s limited from, and we hardly ever hear her complain. She has such an incredible attitude.”

When it comes time for play, Ella loves to put on a superhero cape, a symbolic reminder of the strength she is gaining each day. Jay said the cape came into play when Vanessa put the word out that they wanted this to be as positive an experience as it can be for Ella – that this was to be her "superhero cape." "Friends and family started sending superhero capes in the mail. It was really touching. We have a whole chest full of them,” he added.

Vanessa and Jay describe their experience at Shriners Hospitals for Children — Northern California as truly transformational.

“To go from hearing your daughter has a condition that could potentially become life-threatening, to immediately being in the hands of the best care in the world, is quite a significant journey, and Shriners is creating a very happy ending for us, for which we are so grateful,” said Vanessa.

Jay shared the same sentiment, “Whenever we’re at Shriners we feel safe and taken care of. Ella is in the best hands there. Her doctor, nurse practitioner, nurse manager, cast tech, and the whole team are such skilled and compassionate people.”

Ella wearing one of her capes