Anna Artigas is like most teenagers. She goes to school, keeps up with the latest trends, and likes to swim, scuba dive, golf, and travel.
What sets the Saint Edward’s sophomore apart is that she recently returned from Uganda, where she played a key role in a 10-day surgical workshop presented by the Association for the Bladder Exstrophy Community, an international support network for patients and families living with bladder exstrophy. Anna not only gave a formal presentation, she spent 12 to 14 hours a day at the hospital, answering questions and reassuring families that the future is full of opportunities.
“I was invited to let them know their children can live a fulfilling life, that they can go
to school, play sports, and become a parent someday. I helped them understand what it’s like to live with bladder exstrophy and trained them on the day-to-day care,” says Anna, who was born with the rare condition in which the bladder develops outside the fetus, requiring deli- cate surgery by urologic and orthopedic surgeons, followed by months of healing.
“Urology experts from Johns Hopkins were at the workshop as well as surgeons and dignitaries from Uganda and other African countries. As a team we worked with over 18 families from Uganda,” Anna continues. “Some of the children had complex surgeries, while others received follow-up care. I helped by telling my story and listening to what the kids were going through. Many times, after hearing what I had to say, they were no longer afraid.”
That’s because Anna’s story, from being adopted from a Chinese orphanage when she was 4 years old, to enduring eight surgeries and facing more, is one of courage, persever- ance, and, above all, love.
An overflowing amount of that love comes from her adoptive mother, Pamela Artigas, who had long wanted to adopt a child from China. She just needed to find the right one and a way to make it happen.
“I was at work one day and Anna’s picture popped up on my computer screen,” says Pamela. “There she was, wearing a little pink dress, sitting on a bicycle and smiling. It was serendipitous, like the legend of the red thread that winds its way around the world and connects certain people. I just knew she was meant to be mine.” As she finishes, mother and daughter share a smile and their fingers touch.
“After my mom adopted me, she brought me to Seattle Children’s Hospital, where I had a 14-hour surgery that would forever change my life,” says Anna. “The doctors turned my bladder the right side in and put it back into my tummy. Because it was so small, they took some of my intestine to make it bigger. They also made me a belly button from a piece of my appendix, and I had to wear a body cast for four months so my pelvis could heal. I spent so long in the hospital that I forgot how to speak Chinese!”
During the time her daughter was in the hospital, Pamela became good friends with world-renowned surgeon Dr. Richard Grady, who had helped expedite Anna’s adoption and put together her surgical team.
“Dr. Grady and I started talking about the lack of support for children and families dealing with bladder exstrophy, and together we relaunched the Association for the Bladder Exstrophy Community, creating a worldwide support system of experts in exstrophy surgery,” says Pamela, who serves as president and executive director of the nonprofit organization. “We became a global force, helping underserved children receive the care they need and deserve. Our goals are to forge partnerships with patients, their families, and the medical community.”
Having seen Anna grow and stay strong as she deals with numerous medical issues has heightened Pamela’s passion for helping others. Her husband, Dr. Ricardo Artigas, and 16-year-old daughter Lily, also adopted from China, join in her efforts to reach out to those less fortunate. “We have a fundraiser where we gather pj’s for kids in the hospital that I bring with me on mission trips,” Pamela says. “That way they can have a change of clothes after surgery. I’ve basically recruited the whole family, and we all provide a tremendous amount of time and energy for this cause.”
Reflecting on things that have helped shape her life since she was adopted and had that first surgery, Anna’s eyes light up. “When I was 5 years old, I learned how to do my catheter by myself so I could go to school. I have to catheter every four hours, and I will have to do this for the rest of my life.
“One thing I always had to do at the beginning of each school year was to explain to my teachers how I was different. We would make a plan for me to go to the bathroom and where to keep all my supplies. This was hard, because kids were always asking me why it took me so long to go to the bathroom or why I used the teachers’ bathroom instead of the kids’ bathroom.
“When I got into middle school, I was able to keep my catheters in my backpack, but I always tried to go to the bathroom when other girls weren’t in there, because I stand instead of sit. I was very nervous that my friends would find out about my condition.”
As much as Anna tries to be, as she says, “normal,” having bladder exstrophy is always on her mind. She worries that one day she will forget to take her catheters, and she worries about what she’ll say when someone asks her why she spends so much time in the bathroom. There are no sleepovers, as she doesn’t feel comfortable staying overnight at friends’ houses or inviting them to stay at her house.
While there are limitations, there are also opportunities, and Anna, a straight-A student, looks on the bright side when she says, “Having bladder exstrophy has given me a chance to be a better person, to help other kids and their families. I want to show them they can have a good life; I want them to have hope for the future.”
About Anna’s Mother
As president and executive director of the Association for the Bladder Exstrophy Community (A-BE-C), Pamela Artigas has made it her life’s mission to develop a global support network for families dealing with this disorder. Her enthusiasm and energy are contagious as she strives to improve the quality of life for children born with bladder exstrophy and for their parents, who understandably may be experiencing a sense of hopelessness, especially if they live in a developing country where expertise in this rare condition is not available. A-BE-C provides the information, guidance, and resources they need to seek treatment.
Part of Pamela’s job is to raise money to facilitate surgeries for underserved children, and she is currently working with families from more than a dozen countries. A-BE-C not only brings the family to a specialist who can perform the complex surgery, it brings their local doctor to receive the training he or she will need to care for the patient on an ongoing basis back home.