From birth through adolescence and into adulthood, the pediatric urology team at Johns Hopkins provide exceptional care for patients with bladder exstrophy. With his surgery in April 2023 at Johns Hopkins Children’s Center, Camden Mills became the 1,500th patient treated for bladder exstrophy by the pediatric urology team at Johns Hopkins since it started tracking patients in 1975. Christopher Burnis, a former patient of the bladder exstrophy team, reflects on his journey and shares his experience healing at Johns Hopkins.
This is Camden. We call Cam our hero in so many ways. He is so strong, resilient. Such a funny little guy and happy guy when I was pregnant around 19 weeks, it was a routine anatomy scan. We realized that we were not able to visualize a bladder on the ultrasound. I think we knew that there was an issue after probably about an hour and a half of scanning and multiple texts kept coming in and looking at each other and right away, we knew something was wrong while we were waiting on the ultrasound results to come back. You know, our maternal fetal medicine doctor came in and basically said this looks like bladder extra fee. A bladder X is a major birth defect that happens the seventh week of the mother's pregnancy. When the fetus is about the size of a 50 cent piece, the abdominal wall does not form the pelvic bones don't join together and the bladder and the genitalia are born on the outside of the body. So here at Johns Hopkins, we do the modern stage repair of Troy, we do the initial reconstruction when they are an infant restoring that form and function and placing that bladder deep down within the pelvis, parents can then expect a few more major surgeries. The next one is a continent surgery to make them drive their urine. And if there's anything additionally, we need to do to set them up for life as a transition to adulthood, we're happy to do those surgeries as well. And the care of a bladder actually patients, it's a multidisciplinary team approach, the pediatricians, the orthopedic surgeons, the urologist, as well as the plastic surgeons and the general surgeons. Often we all work together. In addition, we use our nephrologist to help us take care of the kidneys and keep their kidneys safe. But the biggest thing too is our, our support staff and our nursing as well as our child life man. I really just own a team at Hopkins literally my life. If I weren't to say that I wouldn't be here. If not for that, I would say that my life would not be as normal or complete without their efforts. And what they did for me when I was born. And even afterwards of that fact, I was six months pregnant, routine ultrasound. And they said that something was wrong with the baby's bladder. We needed to go for a high level ultrasound. So we did that the next day and that was when they did diagnose it as bladder exstrophy. I'd like to see myself as being like a shining example of what Hopkins can do for kids like me and hopefully give to other babies to hopefully give them a better life and give them a more normal life. The quality of care at Hopkins is in my opinion. Second to none and you just have to hang in there and believe that your baby is gonna be fine and just look at Christopher. We're incredibly fortunate, incredibly grateful to be included as part of this blatter exe family. And the team here has been so welcoming and so open. It's really helped us to, to lean on them anytime we have questions, it's uh an anxiety provoking experience and they've been very able to alleviate a lot of that anxiety for us. We were excited to find out that cam you know, was the 1500 surgery of this type and that was amazing to have, you know, 1499 other families that came before us. And that really shows, you know, how experienced this team is. It's a milestone, it's a milestone for Johns Hopkins. It's a milestone for the children's hospital to our nurses and all of our colleagues who help us get these patients. Well, it's helped us clinically. It's helped us in the laboratory and out of Johns Hopkins, we've made the majority of the advances in the treatment of bladder troy in the last 4050 years have come from Hopkins and we've got more discoveries to make. Being part of a program where we've taken care of more than 1500 patients in this extremely rare condition is just so tremendous in that we have the ability to study these patients and families and then improve the outcomes for future. So not only quality of life but everything in the future. And we're learning from our 5567 year old patients, so we can do better for our infants.
Related Presenters
