When two-year-old Savanna Bluford enters Boston Children’s Colorectal and Pelvic Malformation Center, she quickly gravitates toward the waiting room’s interactive light board. Sporting pigtails, sparkly sneakers and an angelic smile, the playful toddler’s attention quickly turns to her doctor — the Center’s Co-Director Dr. Belinda Dickie. The two light up with smiles and exchange hugs as if old friends — and that, they are.
Savanna was born in South Carolina with a rare and complex birth defect affecting the gastrointestinal, urological and reproductive systems.
The condition, called covered cloacal malformation, occurs when the bladder, colon and vaginal channels are connected. This connection causes a mixing of stool and urine, which exit the body from the same location. The malformation also impacts the spinal cord.
In order to correct Savanna’s condition — which affects one in 250,000 children — she will undergo a multi-staged, multi-year reconstruction process to repair all three systems.
When it came time to find a pediatric surgeon that specializes in such complexities, Savanna’s parents searched the nation for an expert — and they found Dr. Dickie.
“There is just something about Dr. Dickie that truly inspires us and makes us feel confident,” says Andrika, Savanna’s mother and home health nurse. “She is passionate about Savanna’s well-being and future quality of life, and she is very competent and skilled to manage the care of kids like our daughter.”
From the beginning
Savanna came into the world by emergency C-section at 29 weeks, weighing 3 pounds, 5 ounces. The tiny fighter was born with a small knot below her spine, an imperforated anus, and urine and stool were exiting from one channel.
Because of Savanna’s frailty and complicated anatomy, Andrika couldn’t see her newborn until the next day.
“When I first laid my eyes on Savanna, I cried,” she recalls tearfully. “She had IV’s, umbilical lines, a mechanical ventilator assisting her to breath, fluids to essentially nourish her little body, and antibiotics to protect her from infection.”
Savanna spent 56 days of her young and delicate life in her local hospital’s neonatal intensive care unit. During that time, she underwent a colostomy, a procedure designed to allow for the passage of stool.
But on day 56, things changed for the better. Andrika held her small, medically complex baby for the first time and gave her a bottle. It was also the day she and Savanna’s father, Derrik took their daughter home.
“This was such and exciting and scary day,” Andrika recalls. “Savanna was finally going home to meet her family and sister Madison, who loves her.”
The road ahead
Over the next eight months, Savanna underwent a series of surgeries at her local hospital including a spinal repair. Due to complications, Savanna was required to stay in the hospital for another 45 days.
It was time to find a specialist.
In July 2015, Savanna’s care was transferred to another hospital nearly 500 miles north. It was on that medical trip, they met pediatric surgeon, Dr. Belinda Dickie.
Dickie’s first action was to address Savanna’s spinal issues and conduct exploratory surgery to study her delicate anatomy. Andrika and Derrik say they remember Dickie’s calming words:
“I will not perform surgery on Savanna if the timing is not appropriate and if her spine is not corrected. You always want to give any surgical procedure the best shot the first time with the least possibility for revision.” — Dr. Belinda Dickie
“As parents, we were ready for Savanna to move forward with surgery but didn’t realize how complicated it was,” Andrika says. “But after reflecting on Dr. Dickie’s words, we gained the most gracious respect for her because we knew she really had our daughter’s best interest at heart.”
Once the spinal repair was complete, the findings were more challenging than the family anticipated. Here, Dickie confirmed that Savanna’s anatomy was even more complex — she had two vaginas, two uterus’ and an ectopic ureter, a condition where urine drains into the tube leading out of the bladder or vagina.
Traveling greater distance for expert care
A few months later, Dickie was named co-director of Boston Children’s Colorectal and Pelvic Malformation Center and Savanna and her family opted to travel from their home state of South Carolina to Boston to follow her.
“When we heard Dr. Dickie was moving to Boston Children’s, I immediately began to do my research on the colorectal program, urology department, and even neurosurgery department,” Andrika recalls. “I was very impressed with their team approach and procedural innovations. So we chose to follow Dr. Dickie.”
Innovations in cloaca care
With multiple surgeries ahead, a team of Boston Children’s experts has been called into action. Dickie and Dr. Leonel Rodriguez, center co-directors; Dr. Joseph Borer and Dr. Erin McNamara from urology, and Dr. Benjamin Warf from neurosurgery make up Savanna’s care team.
Once Savanna has grown, the reconstruction process will begin with addressing her ureters and bladder. At the same time, Dickie and team will reconfigure Savanna’s vaginas and perform a pull-through procedure — reconstruction of the bowel (or stoma) and a new anus is created.
“There are very few centers in the US and world that take care of Savanna’s condition,” Dickie says. “We have a wonderful, highly specialized and innovative team assembled who have the clinical expertise and compassion to work with these kids.”
A bright outlook for Savanna
Today, Savanna, who manages ongoing medical appointments and the physical challenges of a colostomy bag, is a happy, loving, spunky toddler who loves her family, hugs and kisses.
She is also doing all the things she loves including cruising around her neighborhood in her motorized princess car, going to the beach and attending a toddler tumbling class.
“Savanna is a child with so much life and joy and really brings a smile to everyone’s face when you meet her,” Dickie describes. “Every visit with Savanna amazes me on how well she is doing, how adjusted she is and what a fabulous job her parents are doing with her.”
Andrika and Derrik travel great distance for the best care for their daughter because they know their medical team at Boston Children’s will carry her through.
“We love Dr. Dickie dearly and are beyond grateful for the opportunity to be able to see the medical team at Boston Children’s,” Andrika and Derrik agree. “We’ve learned that she is not only our surgeon but we’re a team. She will always be a hero to us.”
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