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>> My name is Honey Co. I'm from Punjab, India.
>> This is [name]. I am from Bangladesh.
>> I am from Sri Lanka.
>> I am from Nepal.
>> My baby born with Bladder Exstrophy.
>> Like what is this? What -- we don’t know the name also actually.
>> But I didn't know what it was.
>> Really painful for us.
>> My gynecologist and my family didn't know what to do with that baby.
>> 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.
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>> There's a lot of stigma that goes with this. And these families feel like
they're shunned. They feel isolated.
>> 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.
♪♪
>> 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.
>> 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.
>> 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.
>> 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.
>> 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.
>> 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.
>> Share what you're grateful for but acknowledge what is difficult at the same time.
>> 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.
>> 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.
>> 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.
>> 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.
>> I do what I do.
>> Why do I do what I do?
>> I do what I do.
>> The hardest part is like getting it to one sentence.
>> 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.
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