The A-BE-C Uganda initiative continues to grow with each passing year. This October, A-BE-C was represented by a dedicated team of surgeons (Dr. Ran Mathews & Dr. Anthony Schaeffer), nurses (Marlo Eldridge, Holly Shimomura & Alexa Penton), a social worker (Emily Haddad), and patient advocates (Janet Gibson & Noelani Shimomura) who traveled to Uganda to teach and train local Ugandan medical professionals in the care of bladder exstrophy. Patients who had previous surgeries came for follow-up care and others for surgeries, including two primary closures and consultations to discuss future surgeries.

A few highlights from the trip: 

Seeing Balam, a 23-year-old young man who had his first surgery in February, 2023. Balam grew up in a remote village in eastern Uganda where he rarely left his home. Prior to surgery, he was quiet, reserved and uncommunicative, but as he shared, “I now have the freedom to leave my home and do what I want to do. I want to be a teacher, a preacher and a mechanic and now I believe I can do all of those things.” 

Balam’s confidence and his smile are a reminder of the importance of the work being done to better the care of those living with bladder exstrophy in Uganda and around the world. 

Visiting BE Patients in Their Villages

Forests, sugar cane fields and many dirt roads led to the homes of Rachael and Collins, where the team was welcomed with big smiles and lots of hugs.

A-BE-C recently presented its Richard W. Grady Humanitarian Award to Dr. William Reiner, Child and Adolescent Psychiatry, Urology. The distinguished award was presented during the 2023 International Exstrophy Conference in Seattle, WA, by Dr. Paul Merguerian. The award honors those who have elevated the standards of care for children born with the rare medical condition of bladder exstrophy. Dr Reiner, a world-renowned Child and Adolescent Psychiatrist, spent his career focused on the psychological aspects of bladder exstrophy. 

About Dr. William Reiner

For nearly 50 years, Dr. Reiner has specialized in research and care of the developmental aspects of children and adolescents with bladder exstrophy and those intersex conditions. He has worked with over 600 bladder exstrophy patients in research and clinical care. 

Dr. Reiner trained in Adult and Pediatric Urology at the Johns Hopkins Hospital, working with children, adolescents, and adults with bladder exstrophy and other complex urological birth anomalies beginning in 1976. He also trained in Psychiatry and Child and Adolescent Psychiatry at the Johns Hopkins Hospital, again working with exstrophy patients. Dr. Reiner was on the faculty at the Johns Hopkins Hospital full-time until 2003 and then moved to part-time until retiring in 2016. From 2003 to 2016, he also was on the faculty at the University of Oklahoma Health Sciences Center as a full professor, retiring in 2016 as a Professor Emeritus. He has authored numerous research articles and textbook chapters and led dozens of group panels with teens and young adults, discussing issues they struggle with while growing up, such as gym, sports, dating and privacy issues. Dr. Reiner now consults with physicians treating bladder exstrophy and patients and their parents and serves on the A-BE-C Advisory Board.  

Known for his infectious smile and warm hugs, Dr. Reiner is always surrounded by the children and adults he has helped. When asked to summarize his career, he shared, “By far, the favorite part of my job has been volunteering with A-BE-C at the annual meetings,” which he has done for over 25 years. 

About the Richard W. Grady Humanitarian Award

Named for the late Dr. Richard W. Grady of Seattle Children’s, an internationally known expert and humanitarian known for inspiring and leading initiatives to reduce world suffering related to the condition of bladder exstrophy, the Richard W. Grady Humanitarian Award is given to recognize the work of others with this same spirit. The award, established in 2018, honors individuals for their outstanding humanitarian and volunteer work to improve the health of those affected by bladder exstrophy. Award recipients are individuals who exemplify the highest value of leadership, excellence in clinical care and research, innovation, teaching, volunteerism, advocacy, and dedication to improving the health of those living with bladder exstrophy around the world. 

Written by Cassandra Strunk

“There were some abnormal findings in your ultrasound that we’d like to discuss with you…” 

“…low insertion of umbilical cord, poor visibility of genitalia, and absence of urine filling the bladder.” 

“I want to refer you to an MFM clinic for further diagnosis.” 

These were the statements presented to us after our 20-week ultrasound. Like many people, my husband and I had never heard of Bladder Exstrophy, so the interpretation of these findings was completely foreign. As we waited for a second ultrasound appointment at a local children’s hospital, I admittingly did what you’re not supposed to do… I turned to Google. After hours of searching and typing in various word combinations that described our ultrasound findings, it led me to some free journals and a textbook on pathologies of the urinary system; in a free chapter of the textbook, I found the definition of “Bladder Exstrophy”. While my husband and I still had hope that everything could turn out “normal”, I’ll never forget the feeling in my gut when I found the definition of BE. That said, I had an odd sense of confidence, feeling that we needed to be prepared to hear that our son would be diagnosed with Bladder Exstrophy. I truly believe that finding the definition of BE prior to our next appointment and the “gut feeling” to be prepared was God’s hand at work– a testimony of God’s guidance to prepare us for what was to come. 

Navigating the Unknown

The second ultrasound found the same findings as the first, and with it came a confirmed diagnosis: Bladder Exstrophy. Not even a minute after receiving the diagnosis, we were pointed in a direction we never thought we’d ever have to navigate: the option to terminate the pregnancy. We were told, “We completely understand if this diagnosis is too much for you, and we support you if you decide to terminate the pregnancy.” Time felt like it stopped as I pondered many ways to answer this doctor, but I do remember my answer being terse, saying that termination was not an option for us. No patient education, no resources to learn about bladder exstrophy, and no referral to specialists were given to us. Instead, the support to terminate was brought up multiple times, speaking of the challenges and the “psychosocial” obstacles our son would face. Their medical staff set the tone–full of devastation and sadness–making me question that maybe there was something terribly wrong. Every medical professional we met kept repeating “I’m so sorry.” A nurse handed me tissues even though I wasn’t crying, and she even asked “do you feel him kicking” with a tone as if I shouldn’t be able to feel him. The answer was yes, I could feel him moving… a lot. My husband and I were instructed to sit next to each other so we could “comfort each other during this time,” when all we wanted to know was the next steps in my pregnancy care and birthing plan. It was only after I asked, “Can I still give birth to a healthy baby,” did their tone change to say, “Oh yes, you and your baby are otherwise completely healthy.”

It is no wonder that many parents are left with confusion and devastation when patient education is lacking and no resources are given to provide hope in knowing that the care to achieve a thriving and optimal life with BE does exist! At that moment, I knew we would be taking things into our own hands, and it was up to us to go out and learn about BE. Thankfully, after coming across the A-BE-C website, we were able to educate ourselves, self-advocate, self-refer ourselves to Seattle Children’s Hospital, and we never looked back. Xander was going to get a chance to receive the best care in the Pacific Northwest.

A Healthy, Strong Baby Boy

Fast forward to today, our baby Xander is one-year post-op complete bladder repair. Xander is our definition of “joy,” bringing smiles, light, and strength to everyone around him. His constant laughter and happiness make it seem like nothing in his life has ever caused him pain. That odd sense of confidence that overcame me as I was preparing for the diagnosis, became an overwhelming confidence once Xander was born; it is the confidence in knowing we were made for Xander and Xander for us. Psalm 139:14 resonates in our hearts; Xander deserves to live out his full purpose in this world. He blesses us each day as a growing, sweet boy, continuing to thrive and shine amidst his condition. We can’t wait to see what mighty things the future has in store for our strong baby boy. 

Like many of yours, our story is one of Acceptance of his diagnosis, Bravery in the face of the unknown, Empathy for one another, Courage instead of fear, and Faith in God’s plan.

The first time you meet Dr. Boateng Nimako, you can tell he’s a special individual. It’s not only his calming voice or infectious smile, but also the way he fiercely advocates for his patients. Dr. Nimako lives in Ghana but has spent many years training in Cape Town South Africa, Nationwide Children’s Hospital, Kampala Uganda and was sponsored twice to come to India and train alongside world renowned pediatric urologists. Both years, he not only came for training, but he brought two of his most complex exstrophy patients with him. 

             

First Meeting

I first met Dr. Nimako in 2020 when he reached out to A-BE-C to see if we could help a little girl named Blessing, who at the age of four had her first bladder surgery in India. She is back in Ghana now and Dr. Nimako, in partnership with the US bladder exstrophy collaborative, has been caring for her. In time, she will need another surgery, but she is now in school and doing well! 

             

I was so impressed with his ongoing commitment to caring for complex children being one of a few pediatric surgeons in Ghana. We invited him again in 2023 to bring a child to India that he had been taking care of for several years. When I asked what drove him to work long hours and travel the country to look after these kids, he simply said, “I am committed to giving these kids and their families an opportunity to integrate socially in the community. I also want to improve their quality of life.” 

 

A Fierce Advocate

Dr. Boateng’s commitment is evident. He once again advocated for a little boy named Jaafar, who was born in 2013. We learned about Jaafar when Dr. Nimako consulted the US surgical team about a serious infection Jaafar developed after being treated at another hospital. Dr. Nimako spent months treating the infection to prepare him for surgery in India. Jaafar’s mom, Asmau, shared with me that until she found A-BE-C and was referred to Dr. Nimako, she felt hopeless. His two previous failed surgeries had destroyed his bladder and his spirit, and he spent many months in severe pain. Dr. Nimako, eager to learn more about treating bladder exstrophy, joined A-BE-C at Uro Care in Uganda for another week of training. It would be another two months of recovery at Civil Hospital in India before Jaafar was well enough to fly back to Ghana. Instead of returning home, he was immediately admitted to the hospital and once again under the committed care Dr. Nimako. 

“The sharing of knowledge of all participants in the care of the kids with bladder exstrophy provides the opportunity to learn from the experience of other surgeons. I also like the complete primary repair approach to bladder exstrophy because it is the most viable option for the Ghanaian kids.”  – Dr. Nimako

I am confident that we will continue to partner with Dr. Nimako so that more children in Ghana will receive quality care and treatment for bladder exstrophy. 

             

After two years of delays due to Covid, and then another delay due to an Ebola outbreak in Uganda, the US team was finally able to hold our second workshop at Uro Care in Kampala.

Our committed team consisted of two lead urologists, Dr. Ranjiv Mathews and Dr. Anthony Shaeffer, as well as an orthopedic surgeon, a pediatric anesthesiologist, social workers, a team of Johns Hopkins nurses and a teenager with exstrophy. Together with the Uro Care team, the team performed five primary closures and an epispadias repair.

Together we treated, connected with and supported 23 families from all over Uganda.

While patients were being treated in the OR, their families gathered in the courtyard for exstrophy education, art therapy, counseling and just enjoyed being a part of the BE community. In addition to providing stellar care to 23 families, 15 doctors came from Uganda, Ghana, Tanzania and Kenya to observe and learn. Bonds were made and lives were changed.

This year’s workshop was in loving memory of Dr. Martin Situma.

Check out the highlights from our trip!

A-BE-C is so proud to be a part of the annual Bladder Exstrophy workshop which celebrated its 15th year in January!!! After two days of extensive discussion and five days of complex surgeries, I can’t thank Civil Hospital enough for their ongoing commitment to our beautiful children and families living with bladder exstrophy.

Here are a few highlights:

• Pediatric urology residents from more than 10 different countries attended this unique live, hands-on workshop.
• We treated, counseled, or performed surgery on more than 150 patients. This included new patients as well patients returning for their yearly follow up.
• Our families came from 14 different states in India and five different countries including Bangladesh, Ghana and the Bahamas.
• 17 surgeries were performed over the five day workshop, including four international patients and 14 states of India.
• We had the support of Rachel Fisher Althizer, a young woman with exstrophy from the US, bringing hope to these families.
• In addition to an expert team of dedicated pediatric urology surgeons, the collaboration has grown to include A-BE-C, geneticists, nursing, and research.

This one-of-a-kind, worldwide collaboration to treat one of the most complex anomalies was started in 2009 with the blessing and support of India’s Hon. CM Shri Narendra Modi, and it continues to grow each year. Dr. Rakesh Joshi and his entire department at Civil Hospital Ahmedabad work tirelessly all year and play a crucial role in supporting our mission that ANYONE BORN WITH BLADDER EXSTROPHY SHOULD HAVE BEST POSSIBLE SURGICAL OUTCOME.

This year’s workshop was dedicated to the loving memory of Dr. Douglas Canning.

Check out highlights from our trip!

Anna Artigas, daughter of Executive Director Pamela Artigas, is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Uganda as part of a service project to provide support to teens with exstrophy. Above, Anna helps prepare A-BE-C care packages for all the children receiving surgical and follow up care.

Anna’s Story

Rachel Althizer is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Ahmedabad, India, as a social worker to assist children and families with exstrophy as they prepare for surgery. Above, Rachel prepares for her trip by packing hospital matching cards for exposure therapy and therapeutic play.

Rachel’s Story

My stoma is located where my belly button should be and I was told to catheterize every 4 hours. I then became the youngest patient of Gearhart’s at the time to catheterize myself in October 1996. Since then, I have been healthy and happy, only having a few minor surgeries in middle school, high school and adulthood.

I have attended the John’s Hopkins bladder exstrophy picnics and always looked forward to them. Community and connecting with fellow bladder exstrophy patients and families has brought me and my family so much support over the years.

I currently live in eastern North Carolina with my husband and have a bachelor’s degree in psychology and master’s in social work. I work as Director of Human Resources within my family’s business and am beyond lucky to work with my mom and siblings every day. But my passion is for traveling and helping others.

I volunteered in Peru for two months during college, fostered 13 beautiful children during an internship and have been a foster care social worker. I have worked as a mental health therapist with children in multiple settings such as hospitals and schools. It is a passion of mine to connect with children and families and to continue to contribute to the bladder exstrophy community.

I am ready to emotionally and therapeutically support the families I will meet in India. It is amazing that the association of bladder exstrophy has been able to connect us on a global scale. I hope to be an asset to the medical team with my experience as a patient and social worker.

A Gift of True Love

On March 3, 1952, I was born with Bladder Exstrophy.  

Soon after birth, I had surgery to have my bladder removed and doctors put my urethra into my colon so I passed everything from my bowel. 

During my childhood I remember lots of appointments, biopsies, X-rays, blood tests, hospital stays and lots of time off school due to urinary tract infections. I didn’t really mind because I was bullied at school. But my mum was amazing and she supported and helped me immensely. Mum mainly supported me on her own, since my Dad died when l was 10, but she had help from my aunt, who was a nurse, to help her out in many ways. I don’t remember my older brother knowing about my exstrophy, but I shared information with him later in life and he has been an incredible support system. 

Working through the scars

When I was getting a lot of urinary tract infections I had one of my kidneys removed, as one of my kidneys was only functioning at about eight percent. The doctors thought the low functioning kidney might have contributed to the urinary tract infections that I was suffering.

The scars that I was left with (both mentally and physically) meant that my genitalia was very deformed. When I was about 20 I had a two part vaginal repair. The dating years were certainly confronting for me. It meant that I didn’t have many long term relationships. It was the hardest thing to confront with boyfriends. I was dumped a lot, and I know it was because of my Bladder Exstrophy. In December, 1973, I met my wonderful husband of over 48 years. We have three adult children…two biological sons and one adopted daughter from Korea. 

In 1986 my urinary tract was refashioned to a urostomy where I needed a bag to collect the urine. I had two c-sections for the boys and have had two vaginal prolapse operations. Before the vaginal prolapse operations, I had to wear a vaginal pessary which was very uncomfortable. It was not until I was around 50 that I confronted my demons. I was at a stage in my journey that I was feeling very down. I had not recognised the signs of depression. My doctor referred me to a psychiatrist. He helped me very much, putting my life and what I had to endure into perspective. 

Needing a Miracle

Over the years my kidney function deteriorated to the point where I needed dialysis. I was on dialysis for two and a half years when I was offered a transplant. This meant waiting for maybe years, but a friend offered one of her kidneys. Unfortunately during the work up process it was found that Rosemary was ineligible because her father had died from kidney cancer. 

I had given up hope but my husband, Lindsay, offered to donate one of his kidneys. He tested positive for being a compatible candidate for transplant. In October, 2022, I received one of his kidneys. It is functioning very well, and we are both recovering well. I have been very fortunate to not only have had the top general practitioners, surgeons and specialists, but to have found a man who not only loves me but also saved my life. This journey with exstrophy, and now the kidney transplant, has bonded us immensely. 

The support from my husband has obviously been incredible, but I’m so fortunate to have an amazing family that has supported me throughout the years. I have had the best of people around me. I have been able to work in the disability field for 35 years, played sport and raised a family. I would say I have had a pretty normal life so far and now that I am not on dialysis my husband and I can do some travelling . Organisations such as ABEC are a great support for me. Best wishes everyone.