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A Tale of Two Sisters

A Tale of Two Sisters

Ruby and Rachel credit their double success over scoliosis to the family-centered expert care at Children's Hospital

Rachel and Ruby Most parents do not imagine scheduling a major surgery for their child. Tim and Angie Amanns found themselves doing just that – not once, but twice – as their daughters faced crippling diagnoses.

Rachel and Ruby Amanns were both diagnosed with scoliosis in their early teens. Scoliosis is a condition where the spine becomes curved or rotated. It is most common in late childhood and early teens, and in some cases, scoliosis can cause deformities or disabling pain.

Typically, scoliosis can be corrected by wearing a back brace. Back braces are used to control the progression of the curve; they help most patients avoid major surgery. But for 25 – 35 percent of scoliosis cases, the back brace is not enough or their curve is too big, and they must have surgery. This was the case for both Rachel and Ruby.

“Nothing prepares you for your child going into surgery,” says Angie Amanns. “But Children’s Hospital makes it better, no matter how major it is.”

Rachel was diagnosed with scoliosis at age 11. Her younger sister Ruby was diagnosed at age 14. As they matured, their curves became worse. Both girls wore back braces for 16 hours a day, every day, for a combined three years. While the braces slowed the curving of their spines, it was not enough to correct them. When it became evident that surgery was needed, the family weighed their options.

“Rachel hates needles,” says Angie. “She has a very low threshold for pain. But she has always been athletic and healthy, so it made sense to go ahead and get the surgery when she was young.”

Corrective surgery for scoliosis cannot be performed until a child’s body has finished growing. Therefore, at age 17, the eldest Amanns s daughter underwent the surgery first. Three years later, her sister Ruby would have a similar procedure when she turned 17. Dr. Cameron Sears, an orthopedic surgeon at East Tennessee Children’s Hospital, performed both surgeries.

MAKING IT BETTER

Dr. Sears and fellow orthopedist Jay Crawford, M.D. perform approximately 50 – 70 scoliosis surgeries at East Tennessee Children’s Hospital each year.

“We are essentially the only doctors in East Tennessee who do them,” says Dr. Sears. “That includes healthy kids like the Amanns sisters, as well as children who have scoliosis due to more involved health issues like cerebral palsy, spina bifida, congenital deformity or other syndromes.”

Scoliosis surgery involves straightening the spine and then placing metal rods along either side, to help keep the spine from curving or rotating out-of-place again. In 2014, Rachel’s surgery also included a necessary bone graft to help fuse her curved vertebrae. Bone grafts are a way of transplanting bone tissue from one part of the body to another, to help fix damaged bones or problem joints. When Rachel had her surgery, Dr. Sears used bone tissue from her hip. By the time Ruby underwent the surgery in 2017, physicians had switched to a synthetic bone graft.

“This was the biggest surgical change in the three years between Rachel and Ruby’s surgeries,” says Dr. Sears. “The synthetic bone graft works just as well in most cases. Plus, it shortens operative time and decreases pain a bit.”

"Nothing prepares you for your child going into surgery," says Angie Amanns. "But Children's Hospital makes it better, no matter how major it is."

TREATING THE PATIENT, BREAKING THE MOLD

Rachel (left) says running helps alleviate lingering pain from her scoliosis surgery, while Ruby (right) finds relief in art and music.

This new surgical technique is just one of many ways East Tennessee Children’s Hospital has worked to improve surgeries in the past three years. Children’s Hospital has evaluated the entire surgery process, from the moment patients walk in the door to the moment they go home. The hospital’s goal has always been to keep patients safe while treating them, but they also want to keep their patients happy. Therefore, the surgery team focused on treating the individual and shortening recovery time, so that patients can get back to being kids quicker.

“Rachel was laid up for weeks after her surgery,” says Angie. “She just laid there. She didn’t want to move. Meanwhile, Ruby was out throwing a Frisbee around just two weeks after hers.”

“We know every child is different,” adds Tim Amanns, Ruby and Rachel’s father. “But I really feel the difference in the way they came back after surgery just shows how much medicine has improved in three years.”

Dr. Sears notes that the biggest improvements have stemmed from the teamwork of devoted employees across the hospital.

The rule book for recovery and early education has been rewritten over the past three years at Children’s Hospital. In an effort to treat the individual’s needs, staff and surgeons have implemented new practices to keep kids healthy, happy, and safe.

The years-long process of improving culminated this past March, when Children’s Hospital opened its new Surgery Center. The center features 14 state-of-the-art surgery suites, a streamlined pre- and post-operation area, and a colorful, comfortable waiting area. Alongside room for emerging technology, the new surgery center incorporates new ways to treat the overall surgery experience for patients and families.

How has surgery changed in the past three years? Dr. Sears points out that surgery patients are no longer required to routinely go to intensive care for the first night after surgery. This speeds recovery because it reinforces to everyone that the patient is stable and ready to get over the surgery, not just lie in bed an extra day. He also states that the pain and palliative care team has provided significant enhancements in the past few years. The use of various therapies and massages provided by pain management specialists helps to get kids moving in a way that medication alone cannot.

But perhaps the most important new practice for any surgery is the early education provided to patients and families.

TEAMING UP

When a family visits East Tennessee Children’s Hospital, our experts include them in the care process. Our physicians and nurses talk with families, because we know that family-centered care requires teamwork.

“I think our current team approach helps,” Dr. Sears reflects.

Family plays a critical role in the recovery and healing process for any patient. Where Children’s Hospital’s team approach really succeeds is bringing in the family early in the planning process for surgeries.

Beginning with the specialists’ office, Dr. Sears and his team educate the family before they even schedule the surgery. Then, families are brought into Children’s Hospital the day before the operation to go over physical therapy, pain management, and social work. After the surgery, a carefully trained team of post-op nurses and pain and palliative care specialists help get patients up and moving.

“It all comes together to alleviate fears and concerns that patients and families have about what is a big surgery,” says Dr. Sears. “It’s a once-in-a-lifetime experience for many of these families.”

For Tim and Angie Amanns, they had to go through it twice in a lifetime.

“When Ruby was diagnosed, I thought, ‘Well here we go again,’” says Angie.

“I wanted to have the surgery,” says Ruby. “After watching my sister go through it, I was a little nervous. But it had to be done.”

Both surgeries were successful, and both girls are happy, healthy, and very active. Rachel, now 20 years old, never sits still. Though still grappling with mild pain, she loves running and yoga. Ruby is a senior in high school and an aspiring artist and musician. She hopes to one day own her own music store.

Many families never imagine having to plan two major surgeries within three years. The Amanns credit their double success over scoliosis to the family-centered, expert care at Children’s Hospital.

“Children’s Hospital did wonders for our girls,” says Angie. “If we can help a family relieve their stress over surgery,” says Angie, “I can’t say it enough. Children’s Hospital is the place to go.”

PAIN, MANAGED

In January 2014, East Tennessee Children’s Hospital put together a multidisciplinary team of experts with one goal in mind: to improve care and reduce complications and length of stay for scoliosis patients.

“Surgery can cause any number of side effects, including pain, nausea and constipation,” says Lorna Keeton, P.N.P., director of the pain and palliative care program. “For scoliosis patients, any of these complications could affect their mobility early on. If they don’t get up and get moving early in the recovery process, they’ll most likely be in the hospital longer. And we don’t want that.”

Since 2014, Keeton and a multidisciplinary group of experts have studied the best way to decrease a child’s stay in the hospital after scoliosis surgery. What they found was that pain medication by itself was not enough. In fact, they stopped using opioids altogether, and implemented a milder mix of pain relief medications. These are customized for the individual patient, and allow the patient to avoid taking narcotics. Alongside this new approach to medication, the pain and palliative care team began incorporating alternative pain management solutions like massages, aromatherapy, and art and music therapy. And the results have been well-documented.

Since 2013, pain and palliative care has helped decrease the length of stay for scoliosis patients by 46 percent. [PULL QUOTE, if possible] That means patients like Ruby stay only half as long as her sister Rachel did three years ago.

Rachel’s surgery came at the tail-end of prescribing narcotics for post-operative pain. Because of this formerly common practice, she relied on medication for pain, and was less able to get up and move around after surgery. By the time Ruby had her procedure, Keeton and her team had devised new ways to educate patient families about alternatives to pain management before surgery.

“This education outreach has shown less stress, more satisfaction, and a greater willingness to participate as a family in their child’s care,” says Keeton.

“Ruby’s surgery felt like a breeze,” laughs Angie. “Of course, she got to see her big sister go through it first, so she knew what was coming. But I really think the new ways you guys do things helped.”

DID YOU KNOW?

Pain and Palliative Care is not covered by most health insurances. Your donations help support the program and improve the lives of our patients every day. To learn more about contributing, visit www.etch.com/Specialties/Pain-Palliative-Care.