Ninth international workshop for bladder exstrophy makes an impact for all

Did you know that more children are treated for bladder exstrophy in January than any other month of the year?

Many of the world’s leading experts on exstrophy start each year with a trip to Ahmedabad, India in January for the week-long Operative Workshop on Exstrophy. It began in 2009 as a partnership between the Civil Hospital at Ahmedabad, India and three US Exstrophy Centers of Excellence: Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital Medical Center and Seattle Children’s. The founding mission – to optomize and improve the care and outcomes for children born with badder exstrophy and improve the care and outcomes for children born with bladder exstrophy – has grown into an international collaboration for the neediest children and families affected by the condition.

Notes from the field from Pamela Block, executive director of A-BE-C

I recently returned from India where I traveled with a team of surgeons, many of whom have been making this journey for the past nine years. Even though this is my third trip, I continue to be awed by the dedication and passion of this group that has come together from all over the world. I am humbled and inspired by everyone at the event as each year brings greater impact to our bladder exstrophy community through the care, teaching and excellence in innovation.

Each year, many of the 160 children who have been treated since the workshop’s inception return to Ahmedabad for follow-up care and additional surgeries. Because of this workshop, these children and their parents now have hope for the first time. I have also witnessed a growing trust and sense of community amongst the families and the local team of doctors. The children have become friends and support each other during their time in the ward. Senior surgeons Dr. Douglas Canning and Dr. Pippi Salle work tirelessly, performing surgery after surgery while teaching and sharing with other surgeons their collective decades of experience and skills.

Reflections from the medical team

  • The 9th annual Exstrophy workshop is dedicated to Richbhai (Dr. Richard Grady).  All of us here at the department of Pediatric Surgery love Richbhai as a part of our family. In his seven trips to India, he has changed the whole perspective of the department of Pediatric Surgery, also putting us on the global map for bladder exstrophy work. This has been Richbhai’s legacy for us. Our best tribute to him would be to continue and carry forward this legacy by developing a Center of Excellence in the management of Exstrophy; this would realize his dream of giving whole-hearted and committed care for such children. – Dr. Joshi Rakesh
  • I’m honored to be a part of such an incredible group that has organized itself to come together to perform this much needed, highly skilled and noble work for the most needy of the children and families. I applaud and thank the foresights of Dr. Richard Grady, Dr. Aseem Shukla and Dr. Atul Thakre, the dedication of the Ahmedabad team and subsequently all of you/us from around the world. It’s a testament to each one of you as talented, dedicated, professionals as well as passionate, kind and generous people, who strive to make each year more successful, productive, efficient and more meaningful despite the many demands in your lives.  I leave each year more inspired, impressed and in awe of all the individuals I see each year and by those whom I meet for the first time. – Dr. Anaja Kundu
  • Drs. Rakesh Joshi and Jaishri Ramji truly demonstrated their unquestioned leadership skills by rallying their residents–despite crushing clinical commitments–to prepare detailed patient summaries.  The preparation and organization this year was invaluable, and confirmed to all that Civil Hospital deserves its reputation today as a comprehensive international bladder exstrophy center.   Your continued partnership, support and commitment to the Indo-US partnership is essential and, thankfully, unwavering! –  Dr. Aseem Shukla
  • Thanks to Pamela Block and A-BE-C for all that you were doing out there in wards, spending time with patients and their families, teaching them benefits of CIC and about post op care after such supra major surgery. We hope this will lead to better acceptance of CIC in our set-up. Thanks once again for the thoughtful gifts which kept all patients smiling all the time. – Dr. Rakesh Josh
  • Of course we really couldn’t have such a wonderfully productive workshop were it not for the involvement and dedication of the trainees – both at Civil Hospital (you guys are truly superstars – working with us all day long and then keeping current with the day to day needs of the Pediatric Surgery Patients) and Dr. Jason Van Batavia & Dr. Andrew Stine.  You all keep the workshop current and your questions and thoughtful suggestions are the fuel that drives the workshop – thank you for all that you do. This also goes out to the staff at Civil Hospital in the wards and in the Operating rooms. And to our 2017 international observers – Dr. Martin Situma, Dr. Huixia Zhou, Dr. Wei Cheng, Dr. Rodrigo Romao and Dr. Ana Bujons. Your dedication and desire to improve your own skill in the care of these patients is exemplary and I want to thank you for taking time away from your families and your jobs to be in Ahmedabad with us. You added a bi-directional sense of learning as collectively we all learned from each other, about the care of these patients, healthcare systems a and life along the way. – Dr. Pramod Reddy

Thank you to A-BE-C’s contributors & volunteers 

  • Cincinnati Children’s Hospital and Medical Center Woman’s Auxiliary Sewing Volunteers – Cincinnati, Ohio, USA – who lovingly made all the warm blankets and pants. Because of your efforts, our patients stayed warm and dry!
  • Neha Dasai – Ahmedabad, India – for helping the families by providing interpretation during our one-on-one post-surgery training, the kids activities and anytime we needed you. With your support, Carolyn and Pamela were able to effectively communicate with the families, which made their hospital stay much less scary.
  • Janet Gibson – Denver, Colorado, USA – for traveling to India from Colorado to help Pamela with the logistics of the patients flying in, and for contributing to Physician Scholarship Fund so that we could bring in doctors from Africa. Your support will help build a program in India where families can get follow up treatment with a doctor trained in exstrophy care.
  • Karin Moorhouse – Beijing, China – for helping Pamela in the ward with the families and interviewing the doctors and writing their bios. With your support, we are able to highlight the surgeons from different parts of the world and provide referrals to specialty centers.
  • Janet Rankin – Victoria, Australia – for providing a scholarship for a physician to attend the workshop and receive hands-on training in exstrophy care.
  • Cindy Ziobrowski – York, Maine – for putting together and sending the “activity box”. The kids loved all the activities and it gave Pamela an opportunity to spend quality time in the ward everyday. Priceless!
  • Dr. & Mrs Sudhir Chandana, Dr. Nita Thakre, Ravindra and Charugita Shukla for hosting us in the evenings in your lovely homes and special restaurants. The food is always amazing and your hospitality is unprecedented!

A special thanks goes to these kids for BEing Extraordinary! 

  • Anna and Lily Block in partnership with Shorecrest School in St. Petersburg, Florida for donating over 240 pair of PJs!
  • Dawna Boudot – St. Henry District High School, Verona, Ohio – for sewing and filling 110 hobo bags with toothpaste, brushes, bars of soap and small toys!
  • Trisha and Marisa Reddy whose nonprofit organization, A Stitch Just In Time, collected and donation boxes of sutures, catheters and other much needed medical supplies.

Ninth Annual Operative Workshop on Exstrophy

Founders 
  • Dr. Rich Grady – Seattle Children’s
  • Dr. Rakesh Joshi – Civil Hospital, Ahmedabad, India
  • Dr. Aseem Shukla – Children’s Hospital of Philadelphia
  • Dr. Atul Thakre-  Civil Hospital, Ahmedabad, India
Surgeons & Anesthesiology 
  • Dr. Douglas Canning – Children’s Hospital of Philadelphia
  • Dr. Anjana Kundo -Pediatric Pain & Palliative Care Specialist, Anesthesiologist, Dayton, Ohio
  • Dr. Jaishri Ramji – Civil Hospital, Ahmedabad, India
  • Dr. Pramod Reddy – Cincinnati Children’s Medical Center
  • Dr. Pippi Salle – Sidra Medical Center, Doha, Qatar
International Observers 
  • Dr. Huixia Zhou – Beijing, China
  • Dr. Wei Cheng – Beijing, China
  • Dr. Rodrigo Romao – Nova Scotia, Canada
  • Dr. Ana Bujons- Barcelona, Spain
  • Dr. Martin Situma – Kampala, Uganda
Fellows & Residents 
  • Dr. Jason Van Batavia – Children’s Hospital of Philadelphia
  • Dr. Andrew Stine– Cincinnati Children’s Medical Center
  • Dr. Aniz Ratani -Civil Hospital, Ahmedabad, India
  • Dr. Dhruti Kalsaria-Civil Hospital, Ahmedabad, India
Nurses
  • Indu Christian –  Civil Hospital, Ahmedabad, India
  • Carolyn Fazzini- Children’s Hospital of Philadelphia
  • Vishnu Prajapati-  Civil Hospital, Ahmedabad, India