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Hirschsprung’s Disease: A Team Approach to Surgery and Care


>>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.

12 thoughts on “Hirschsprung’s Disease: A Team Approach to Surgery and Care

  1. I was born with GI dysfunction, but nothing at all like this. But even with minor issues, it threatened to interfere with my school. They didn't want me there if I puked that day… I puked pretty much every day. My mom finally convinced the school that if I puked once, then was instantly up and running around, that I could stay at school.

    If something so minor threatened to disrupt my early school years, I can't even imagine what it's like for kids with issues that severe. I'm glad that happy little boy was able to get the surgeries he needed to provide him with a great quality of life. I hope all kids like him are equally fortunate.

  2. HIRSCHSPRUNG DIARIES please subscribe to this channel, i will upload a story about my life with Hirschsprung and what happens before, during and after. please share this with anyone so I can help others to understand what they are going through my email is [email protected] if you need to ask questions, I will post the reply on my video blog THANKS VERY MUCH AND TAKE CARE ALL OF YOU

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  3. My son has this disease and is part of a research study. I worry about him very much. If he didn't have the bag , you wouldn't think there was anything wrong with him. He looks fine and does everything like a normal baby. He is 10 months. On may 16th he goes in to see if he can have his surgery. June or July he will have it done

  4. I have the disease, i’m very fortunate with it though, i play, eat, go to school, swing, slide, everything, i live well, my parents don’t really care but i never ever had this… i had green puke though, i knew it, i know how it feels, its so BAD! I hate it, it always ruins events like my birthday.. :/

  5. I have hirschsprungs and I wanted to find someone that relates to me but I can't find anyone. I really wanna make friends with someone that has hirschsprungs.

  6. My son was diagnosed at birth (even though he had several bowel movements after birth) he had the pull though surgery at 2 months old and he lives a normal life now at 24 years old!! The only thing he has to deal with is more frequent bowel movements and more urgency. Thank you God for this result!!!!

  7. I was diagnosed with LSHD at about a week old. I'm thankful for my surgical team…. I had my last surgery at 9 yrs old. I'm 30 yrs old and have birth 3 children…. Two healthy boys and a daughter (my youngest, that's currently being tested for HD)

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