Bladder Exstrophy (Greece)
In February 2013, Giorgios Bampos was born in Athens, Greece, with a rare urological condition called bladder exstrophy. Deeply concerned for their son and committed to learning all they could about the condition and its treatment, his parents spoke with medical experts in their home country and extensively researched on the Internet. They quickly determined that Boston Children's Hospital was the best place for their son to get well.
"The day my son was born was a very difficult day. They told me he had a problem. I did not know what it was. I was very scared at first," according to Theodos Bampos, the boy's father.
Soon, Theodos came to understand the complex nature of his son's problem. Bladder exstrophy is a congenital condition in which a baby is born with the bladder inside-out and exposed on the outside of the body. Affecting only about one in every 40,000 babies born, bladder exstrosphy is treated through surgery early in a baby's life and then monitored with regular follow-up as the child grows.
One of the main reasons the Bampos family chose Boston Children's was the hospital's experience in treating the condition. According to Joseph Borer, MD, director of the hospital's bladder exstrophy program, Boston Children's cares for between two and six newborns with bladder exstrophy each year. "This past year, we've seen four newborns," Borer reports. In addition, the hospital's team takes care of many new patients who have been treated elsewhere and need additional or follow-up treatment.
Another reason the family chose to come to Boston was the hospital's preferred method of treatment. At present, there are two main ways to approach bladder exstrophy. The "staged approach" requires that the baby undergo three procedures -- one to close the bladder, one to close the urethra and one to reconstruct the bladder neck. Initial surgery takes place within days of birth.
Boston Children's favors the "single stage" or complete primary repair exstrophy (CPRE) approach -- the latter of which "incorporates two of the stages of the staged repair performed at the same time," Borer says. He states that approximately 75 percent of girls and one-third of boys who undergo CPRE do not require bladder neck reconstruction surgery. "The main reason we prefer CPRE is that it can achieve all of the benefits of the staged approach with fewer surgeries," Borer says.
Also, with CPRE, the initial surgery is performed when the baby is two to three months old, a delay that, Borer says, offers a number of important benefits to patients and families. "A 2-month-old baby is much better able to tolerate a major reconstructive surgery," he asserts. What's more, waiting a few weeks gives time for the family and child to bond, and it allows the family to develop a strategy for caring for the baby and preparing for the initial surgery.
During the period between birth and initial surgery, Borer communicated with the family in Greece through phone and email. Theodos even sent Borer photos of the baby, allowing the doctor to confirm the diagnosis, provide detailed explanations of the condition, as well as care and safety instructions for the family.
Borer explains that "from the baby's birth until he arrived at Boston Children's, we outlined the baby's care, letting them know what to expect." Rosemary Grant, RN, who helped coordinate Giorgios' care, says that because the Bampos family was prepared for their journey, "it really helped with Giorgios' outcome."
While in Boston, the family received tremendous support both inside and outside the hospital. Theodos explains that the Hellenic Cardiac Fund helped the family in a number of ways, even securing an apartment right next to the hospital. Child life specialists and International Health Services staff at the hospital were also there to assist the family. "During those months between birth and complete repair, we work hard to help families with day care, accommodations, and continuing education," Grant says.
With all this education, attention and support, it's not surprising that Giorgios came through his initial eight-hour surgery in great shape. "Through the surgery and the immediate post-operative period, he did very well," Borer says. Post-surgery, Giorgios needed three to four weeks to heal. Then, Borer says, "he was up and about, out of his cast and moving freely."
Today, Giorgios is back home in Greece, healthy and well. He's even gone to the beach, something his parents very much hoped he'd be able to do this summer. His journey, however, is far from over. Like all bladder exstrophy patients, Giorgios will need regular follow-up care throughout his life to address issues such as kidney function, bladder development and possible psychosocial concerns. With this in mind, the Boston Children's caregivers are still in contact with the Bampos family, and they are working with Giorgios' team of pediatricians in Greece to monitor his progress and prepare for his return to Boston Children's.
As for the Bampos family, they are pleased that they brought their boy to Boston. "Now that it's almost over, I'm relieved; I'm very happy; I'm at peace," says Theodos. "I also know that I made the best choice."
– Scott Howe