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The knot was the size of a golf ball and as hard as a rock. At first, no one knew what it was, what to do about it or why it was growing so fast. “It was the most terrifying time of my life,” says Brandi Hilliard. On September 17, 2001, the Oklahoma mother gave birth to a beautiful baby girl she named India Grace. But Brandi’s joy over her baby’s arrival was soon entwined with fear about a large bulge in the calf of India’s left leg. Brandi says her daughter’s leg looked tight “like she had been working out.”
In the first week of her life, India underwent extensive diagnostic tests as well as a biopsy, all of which pointed to cancer. With no time to waste—the growing tumor was tearing through India’s skin—her doctors immediately sent the family to St. Jude Children’s Research Hospital. “It was a tough couple of days,” says Brandi. “India had been bleeding from the biopsy site. We honestly didn’t know if she would make it.”
At St. Jude, surgeons stopped the bleeding and determined India’s cancer was a rare infantile fibrosarcoma known for rapid growth. The tumor was so large that Brandi could no longer wrap her hand around India’s leg. After consulting with Brandi and with India’s St. Jude pediatric oncologist, the surgeons decided to shrink the tumor with chemotherapy before performing surgery.
“Amputation is the way many doctors would manage India, but as pediatric surgeons we don’t manage cases that way,” says Stephen Shochat, MD, chief of Surgery. “When we are dealing with children, it’s important to us to retain function. We want to cure the cancer but not by performing a mutilating procedure.” Instead, Shochat’s team takes what he calls a “multi-modality” approach to patient care, working closely with the hospital’s oncologists to find the best ways to treat patients like India who would otherwise be disabled for life if surgeons opted for amputation.
“It was all so much to digest,” remembers Brandi. “But everyone was so good at explaining it all to me so I understood exactly what was going on. They have always gone above and beyond for us.” Brandi will never forget one night in particular when she had been up with India into the wee hours. Brandi regularly lulled her baby to sleep singing the hymn “God is So Good.” But this night Brandi was exhausted, and her voice simply gave out. “Immediately, a surgery staff member who was standing nearby stepped up and started humming the rest of the song to India where I left off.”
Four months of chemotherapy successfully shrank the tumor to an operable size. Finally the day arrived for India’s operation. Brandi dressed in scrubs and joined her daughter in the operating room until the anesthesia started working. St. Jude offers families the unique privilege of allowing parents in the operating room to make young patients as comfortable as possible before an operation. “She was so tiny that you just wondered how she’d get through it,” says Brandi. “Getting to go in there with her and stay until she slept meant so much to me.”
Like most procedures involving infants, India’s surgery was complex. Shochat and his team were able to work around arteries to keep the blood circulating and protect nerves to retain function of the leg while cutting out the mammoth tumor. The procedure was followed by another round of chemotherapy to be sure the cancer was in remission. Afterward, diagnostic tests revealed that the tumor was gone. “It was a miracle,” said Brandi. “My whole family was jumping up and down.”
The miracle doesn’t surprise Shochat, who has expanded the hospital’s Surgery Center from modest beginnings seven years ago. “Many people have no idea the level of complex procedures, especially with infants, that we are doing here,” he says. More than 1,200 surgical procedures were performed last year, bringing the hospital a long way from the days when patients were taken to the former St. Joseph Hospital or LeBonheur Children’s Medical Center for surgery.
“We are doing more than 90 percent of our operations right here,” says Shochat, pointing to the state-of-the-art surgical suites housed on the third floor of the Patient Care Center. The facility was built especially equipped to handle infants and very young children. “There is no longer a need for referring physicians to send children elsewhere for surgery,” Shochat says. Instead, patients can have their initial surgical evaluations, operations and postoperative treatments all at St. Jude.
The Surgery department comprises nine divisions: dentistry; general pediatric surgery, which includes its basic research component; gynecology; neurosurgery; ophthalmology; orthopedic surgery; plastic surgery; urology; and otolaryngology, the study of diseases affecting the ear and larynx.
Besides its role in clinical care, the department is also on the cutting edge of research, with members actively involved in the development of protocols. Shochat and Andrew Davidoff, MD, have done extensive work with neuroblastomas. The department is also looking forward to new technologies on the horizon, including the use of robotics with surgery.
“It sounds very Star Wars, but it looks promising, Shochat says. Bhaskar Rao, MD, specializes in osteosarcomas and has pioneered St. Jude’s efforts in limb-salvage surgery.
Shochat is quick to point out that the hospital’s high level of surgical care wouldn’t be possible without the teamwork among his department, the Operating Room nursing staff and Anesthesia division. “We truly work in concert,” he says. “We have a collaborative approach to treatment that is not found everywhere."
A cut above
The collaboration is probably best described as a medical “ballet” of sorts, complete with acts done in surgical phases, dozens of imaging and monitoring props and a cast of expert characters, everyone from surgeons and nurses to anesthetists and medical industry representatives.
Well before the first incision is made for an operation, operating room nurses scrub in and begin the tedious process of laying out the hundreds of instrument pieces—sterile clamps, scalpels and other necessary tools. The staff consists solely of registered nurses, as opposed to the surgical technicians found at many other institutions. Almost all of the St. Jude nurses are cross-trained, which means that they can perform almost any role—whether that means scrubbing in, circulating or working in the recovery room.
Operating Room Manager Daphne Phillips, RN, explains that cross-training is especially important at St. Jude. “We have a lot of specialty doctors coming in, so nothing is routine,” she says. “We have to be very flexible.” Nursing Surgical Services Director Cathy Love, RN, agrees. “Our nurses are highly skilled, compassionate and committed to providing the highest quality of care,” she says.
The anesthesiologist also begins his work early, first meeting with the family to check the patient’s latest health status. This preoperative assessment is another unique procedure at St. Jude; most patients at other institutions meet with their anesthesiologists days, even weeks, before surgery.
“We don’t take chances with our children,” says Alberto de Armendi, MD, chief of Anesthesia. “A child’s health can change rapidly, so what shows up in an evaluation one day may be different from what is going on when you check the morning of surgery. Every kid at St. Jude offers a challenge because every child has unique complications from their disease. That’s why we tailor our treatment to the individual and not to the disease.”
The anesthesiologist’s work is hardly done when the last stitch is sewn in the operating room. Patients are closely monitored in the Post-Anesthesia Care Unit to be sure they wake up with no problems. On follow-up visits, children who experience aches and pains as a result of their diseases or the medications used in treatment are referred to the St. Jude Pain Management Service. A team of anesthesiologists and other clinicians work together to solve those pain issues. “We believe in the total care of the patient,” says de Armendi. “That is the ideal when you are dealing with children, and that’s what makes what we do here at St. Jude really different from what you would see elsewhere.”
Among the 10,000 cases Anesthesiology handles each year, de Armendi notes that his department routinely provides sedation services to keep children still during diagnostic tests and other procedures in areas outside the Operating Room. Anesthesiology also has a growing research component keen on understanding diseases on the molecular level and finding new drugs for treatment. In fact, St. Jude hosted a regional conference in May that brought the top pediatric anesthesia doctors and researchers from the Mid-South together for the first time to discuss the latest topics in the field. “There is still a lot to learn in pediatric anesthesiology,” says de Armendi. “We’re always on our toes."
Today, it’s 2-year-old India Grace Hilliard who keeps everyone on their toes. The only reminder of her tumor is a thin, tiny scar, which her mother calls “the most beautiful thing I’ve ever seen.” India has full use of her legs and runs her family ragged if they dare chase her. She even plays in the pool with her sister Zoë Bree, and brother Levi. Brandi attributes her daughter’s success to “a lot of prayers and the blessed people who make up St. Jude. The whole surgery staff treated India like she was their baby. I can’t say enough good things about them.”
Perhaps Lunetha Britton, RN, a surgery nurse in the Ambulatory Care Unit, summarizes it best: “There is a camaraderie and humility among the doctors and nurses and staff of all the different disciplines that mesh at St. Jude all because of one basic thing: we truly care about what happens to these children. When they walk through those doors, they become ours and we want only the best for them always.”
Reprinted from Promise magazine, autumn 2003