U.S.-India Bladder Exstrophy Collaborative: World-class Care for More Children

U.S.-India Bladder Exstrophy Collaborative: World-class Care for More Children

Honey Co: My name is Honey Co. I'm from Punjab, India.

Male Speaker 1: This is [name]. I am from Bangladesh.

Female Speaker 2: I am from Sri Lanka.

Male Speaker 2: I am from Nepal.

Honey Co: My baby born with Bladder Exstrophy.

Female Speaker 2: Like what is this?  What -- we don’t know the name also actually.

Male Speaker 2: But I didn't know what it was.

Male Speaker 1: Really painful for us.

Honey Co: My gynecologist and my family didn't know what to do with that baby.

Male Speaker 3: [speaking foreign language] Our minds were numb. We were so stressed. For days, we couldn't bring ourselves to even eat. We couldn't even begin to wrap our heads around how to tackle this disease. We'd never heard of this, nor ever seen it.

Aseem Shukla, MD: My name is Aseem Shukla. I'm a Pediatric Urologist practicing at the Children's Hospital of Philadelphia. Bladder Exstrophy is probably the most challenging anomaly that we deal with in pediatric urology. It's also one of the most devastating ones for the effect that it has on the child and the entire family and the entire child's ecosystem.

Anjana Kundu, MD: There's a lot of stigma that goes with this. And these families feel like they're shunned. They feel isolated.

Pramod Reddy, MD: For a child who's done nothing wrong, to be held accountable for something that you have no control over is really unfair. So by working with these children, getting their physiology and their anatomy put back together in a way that we know and we're learning how to do better, we are allowing them to go back to that normal pathway of childhood.

Aseem Shukla, MD: We went from table to table, bed to bed and we saw Bladder Exstrophy complications in older children, in younger children. We saw Bladder Exstrophy where there had been catastrophic failures. We didn't know if we were even prepared at that time to even begin this undertaking. But what came out of that was the beginning of a relationship.

Rakesh Joshi, MCh, DNB: Every year you can see we started with two. Two this time then 40 people from U.S.A. Started with two patients of Bladder Exstrophy and now we're 142 families. And this year we are going to add 50 more.

Aseem Shukla, MD: We felt that we really don’t have all the answers for these problems. But if we work together over the long term and if we commit to coming back here year after year perhaps we could really start to learn something about this disease that has really bedeviled our field for so many years.

Rakesh Joshi, MCh, DNB: We are not the best surgeons in the world but we are trying. We are trying to give whatever is best is there for this patient - particular patient.

Aseem Shukla, MD: And that's where we are now 12 years later. Perhaps the biggest names in pediatric urology or those doctors who are world renowned for their expertise in Bladder Exstrophy have been here, are coming here and are committed to being here at Civil Hospital.

Jaishri Ramji, MCh: This is a very unique collaboration. We've got a team of surgeons now. We've got a team of anesthesiologist. We've got a nursing team. We've got a team of people who are going to be talking to the families and just talking with them, making them happy and chatting with them. Not doing anything surgical, not doing anything medical. Just getting to know them better and assuring them.

Emily Haddad: Share what you're grateful for but acknowledge what is difficult at the same time.

Pramod Reddy, MD: That's the true success of this program has been that the spread of knowledge and the building of capabilities and capacity here at Civil Hospital is such that we're here for two weeks out of a year. But the rest of the 50 weeks the team here is able to deliver consistently the same level of high quality care for these children.

Paul Merguerian, MD: It has not only helped the local team but it has also helped us as collaborators so we can bring all that knowledge back to where we work at. And now it's become international with over 10 nations being represented or coming in for the workshop.

Pamela Artigas: I know that families have come to realize that they have got an incredible team of doctors who are providing amazing surgeries and yearly ongoing care. And they also know now that they have the association for the Bladder Exstrophy community advocating for them and teaching them how to live with their condition. But most importantly, they know that they have each other. They have built a community here and they support one another every day. And they now know that their children will have the opportunity to realize their greatest life purpose and potential.

Honey Co: We only hope for future is that she understand what she is. I just want to be with herself that I'm very different from everyone and everyone should know me that who I am not because of my problem. But how I could have recovered from that.

Pramod Reddy, MD: I do what I do.

Aseem Shukla, MD: Why do I do what I do?

Jaishri Ramji, MCh: I do what I do.

Paul Merguerian, MD: I do what I do.

Pamela Artigas: I do what I do.

Rakesh Joshi, MCh, DNB: I do what I do.

Anjana Kundu, MD: The hardest part is like getting it to one sentence.

Aseem Shukla, MD: I do what I do because I get to make a difference in a child's life every single day and I really can't think of anything that's more important than that.