>> A toddler who does not have normal function for his bowels or bladder has a severe handicap
because it's interfering with most of his life's goals.
Restoring a way for them to not have their life interfered by their disability removes
their handicap.
♪♪
If the bowel is left to its own devices, it will squeeze and never relax.
The ganglion cell creates the stimulus that makes the bowel relax.
Children with Hirschsprung's disease, their bowels tighten up so they can't have a bowel movement.
>> The cause is the absence of those specialized ganglion cells.
Parents might observe their baby's belly's to become swollen, either very few or no poop at all.
They might notice a lot of vomiting and inability to tolerate any kind of feeding, weight loss,
and they might have made several trips to the pediatrician with formula changes and
various ways of trying to deal with this and nothing else is working.
>> He was born and he refused to feed, and then that night he started throwing up green
bile and his stomach was swollen so they transferred him to the NICU.
Jarrid was sick from the day he was born and was not correctly diagnosed with Hirschsprung's
disease until he was 3.
>> The diagnosis of Hirschsprung's disease can actually be very complicated.
Some biopsies are done at a level where they erroneously miss Hirschsprung's disease.
>> We got the diagnosis of failure to thrive, poop withholding, poor eater, poor weight
gain and reflux, that was a big one.
They kept telling me that he just had GERD.
Finally, I happened upon Children's Hospital.
>> PACE is Pediatric Anorectal Continence Evaluation Program.
It's a program to study and help children who have dysfunction with their bowel movements.
>> The PACE program sees a variety of conditions that specifically focus on patients' bowel
management habits.
That can be Hirschsprung's disease, the imperforate anus, cloacas, functional constipation, motility
disorder.
From the start, you develop this relationship with the families where you get to know the
child, and you're constantly working with them on the well-being of the child and giving
them the anticipatory guidance for what is to lie ahead with the several surgeries that
they're going to need down the line.
>> Pull-through procedure is the ultimate corrective operation for Hirschsprung's disease.
The diseased bowel is either removed or bypassed and normal colo n is put in its place.
>> You bring the part of the intestine that has the cells down to a very short segment
of intestine right at the anus, and you sew the two ends together so the baby can poop
to the outside world.
>> After a child has a pull-through procedure for Hirschsprung's disease, the first few
months there's very close follow-up.
Children who've had a pull-through procedure are at risk for some infectious complications
called Hirschsprung's-related enterocolitis.
They're also at risk for complications of bloating and something called an anastomotic leak.
These are rare, but they require close follow-up.
Once a child recovered after a couple of months, then we do frequent follow-ups so that we can
monitor their patterns of bowel movements and eating and make sure they thrive.
>> I was 4 and a half when I got my pull-through.
>> So after Jarrid's pull-through, he improved tremendously.
I ... we've noticed right away that he was eating more, he was keeping it down, his energy
level was up, he was no longer napping.
He could finally play with the other kids on the playground and have the energy level
that they were having.
>> Well, after two months, there's really no risk of a surgical complication, but the
medical vitality of the children really has to be monitored because they still have an
abnormal setup.
>> It's not something that you have surgery and then you're done and then we don't see
them again.
It's a very close balance because even after they're corrected and we have the regimen
that's working well for them, they can hit these struggles and then they may need diagnostics
down the line.
>> The doctor needs to be dedicated, you need to be dedicated, you all need to be consistent
and on the same page.
>> The surgery's only the beginning of a very long journey, and I'm glad that we have a
program that's willing to spend the time with these families that it takes.
>> So every other day we do the ACE, antegrade, meaning from the top.
So you're irrigating him that way.
So from the top down instead of a regular enema where you're going from the bottom and
then he goes to the bathroom, you're irrigating him from the top, but he still has a bowel
movement through his bottom.
And we do that every other day, and it helps him to stay clean and empty and healthy.
>> They know that they can call us no matter what time of day or night it is.
There's always either one of the nurse practitioners or surgeon that can answer their phone calls.
And that we are always there for them no matter what.
>> We also support these children so they get the appropriate accommodation in school,
such as easy access to a bathroom, early dismissal and medications being given.
All this requires a community — a community of our program, a community of the family,
a community of the pediatrician, and the community of the school.
>> The families that come to our clinic and follow through with our recommendations find
that their children are much more successful in school and social settings such as sports.
>> I could now like run, and I can play with my friends, and I can play football now, and
I don't like have to stay home sick and stuff like that.
>> Jarrid felt better once he was treated.
His personality changed from before to after.
His outlook on life changed.
The family dynamic changed.
The other kids and Jarrid became more communal.
Everything settled into a good lifestyle despite his disease.
>> For the clinician to see a child going from being a sickly little person to thriving,
happy, successful is immensely satisfying because you know you've made a huge difference
in their quality of life.