Amelia's Story Sponsored By Western Milling Quality Feeds
Amelia's Photos Sponsored By Table Mountain Rancheria
BACK TO BEING A KID
Given her name, it’s not surprising Amelia Shakespeare has a flair for action and drama. She sings, does jujitsu and enjoys performing. But little would anyone know this lively 8-year-old underwent reconstructive urologic surgery, improving her quality of life and allowing her to get back to being a kid.
“Amelia is very active and doesn’t let anything stop her,” says Robbie Shakespeare of her daughter. “The surgery made it possible for her to stay that way and do the things she likes to do.”
Amelia’s difficulties with elimination weren’t obvious at first, especially since she looked healthy. She had constipation problems since she was a baby, but it wasn’t until about age 3 that she began experiencing recurring urinary tract infections and incontinence. “It was becoming worse,” says Robbie, whose family of six lives in Fremont. “She had fevers and even a seizure.”
Desperate for answers, Amelia’s pediatrician referred her to Children’s Hospital Central California for extensive testing and treatment. Dr. Devonna Kaji, Children’s medical director, pediatric urology, initially saw Amelia at the Modesto Pediatric Subspecialty Center. Operated by Specialty Medical Group in affiliation with Children’s, the Center provides care close to home for North Valley residents.
“We didn’t want to deal with the traffic in the Bay Area,” says Robbie. “And now, we wouldn’t go anywhere but Children’s Hospital.” Robbie was particularly impressed with the doctors’ and nurses’ pediatric expertise, the amount of personal attention they received, the facilities, and efforts to involve her in Amelia’s care. “Children’s has it all,” she says.
Amelia’s treatment plan at Children’s developed step by step. In addition to ongoing constipation, Dr. Kaji diagnosed Amelia with voiding dysfunction (her bladder leaked urine) and vesicoureteral reflux, or VUR (urine from her bladder flowed abnormally backward into her kidneys). VUR, which occurs in about 1 percent of children, put Amelia at risk for kidney damage.
To fix the tubes that connect the bladder to the kidneys, Dr. Kaji performed ureteral reimplantation surgery. While this resolved the reflux, Amelia’s urinary incontinence continued and didn’t respond to standard medical therapy. A more comprehensive workup indicated the little girl had a neurogenic bladder, meaning the problem related to disease of the central nervous system or peripheral nerves that control urination.
Evaluating every option, Dr. Kaji consulted with
Dr. Gary Magram, Children’s medical director,
pediatric neurosurgery. An MRI scan showed a
congenital anomaly in Amelia’s lower spine.
Dr. Magram surgically removed the sacral cyst. “First we wanted to see if this intervention would alleviate symptoms of Amelia’s neurogenic bladder to avoid doing a bigger procedure,” says Dr. Magram.
The surgery went well but Amelia’s urinary incontinence as well as constipation continued. “Dr. Kaji and Dr. Magram explained everything every step of the way,” says Robbie. “They left no stone unturned.”
Major surgery a last resort
Complex reconstructive surgery seemed the best solution to Amelia’s problem. Dr. Kaji completed a continent urinary diversion procedure to provide an alternate pathway to release urine from Amelia’s body, and a Malone procedure to construct a new channel using Amelia’s appendix to release stool. Both procedures involved creating a valve mechanism outside Amelia’s abdomen through which a catheter is inserted. At the same time, Dr. Kaji expanded Amelia’s bladder with tissue grafts to increase its capacity.
“This approach doesn’t require the child to wear a permanent ostomy bag, or pouch, on the outside and gives more physical and social independence,” says Dr. Kaji. “Amelia can catheterize herself and it doesn’t hurt.”
“It doesn’t hurt if you put it in slowly,” explains Amelia of her catheter during her recent six-month follow-up visit with Dr. Kaji.
Amelia especially likes Dr. Kaji because “she’s always smiling,” and enjoys bringing Dr. Kaji’s favorite food – tater tots – to each visit. “And I love her clothes and shoes!” adds Amelia, who picks out a new outfit each time she sees Dr. Kaji. “You can always tell she’s coming – her fast little feet go clickity-clack!”
“Amelia is a very positive, bubbly child,” says
Dr. Kaji. “We’re glad we could get her back to
being a kid.”