Hirschsprung’s Disease: A Team Approach to Surgery and Care
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- Опубліковано 23 сер 2016
- Hirschsprung’s disease is an intestinal disorder that often requires surgery and long-term bowel management. www.chop.edu/pace
In This Video:
0:31 What is Hirschsprung’s Disease?
0:55 Signs and Symptoms of Hirschsprung’s Disease
1:33 Diagnosing Hirschsprung’s Disease
2:40 Pull-Through Procedure for Hirschsprung’s Disease
4:17 Long-Term Care for Children with Hirschsprung’s Disease
4:50 Antegrade Continence Enema (ACE)
5:27 Living with Hirschsprung’s Disease: School, Sports
The Pediatric Anorectal Continence Evaluation (PACE) Program at The Children's Hospital of Philadelphia brings together top pediatric specialists in general surgery and gastroenterology to provide comprehensive care in one location for children with Hirschsprung’s disease and other long-term bowel management needs. Abnormal bowel function interferes with daily life and health, and long-term coordinated care can help improve health and well-being.
Hirschsprung’s disease is a rare intestinal disorder, also referred to as congenital megacolon, in which ganglion cells fail to develop in the portion of the large intestine that descends toward the rectum. Ganglion cells are what stimulate the bowel to relax. Without these cells, the bowel tightens up and a child is unable to defecate (poop). Newborns will often have an enlarged abdomen or swollen stomach (abdominal distension). Other Hirschsprung’s disease symptoms may include excessive vomiting, inability to tolerate feeding and weight loss. Older children may suffer from chronic constipation. If left untreated, Hirschsprung’s disease can be life threatening.
The Pediatric Anorectal Continence Evaluation (PACE) Program treats more than 300 patients annually in our multidisciplinary clinic. We are experienced at diagnosing Hirschsprung’s disease and tailor treatment to meet a child's specific needs.
Hirschsprung’s disease treatment includes surgical correction, typically using the pull-through procedure, a type of anorectal surgery where the diseased bowel is either removed and bypassed and replaced with normal colon. After a pull-through procedure for Hirschsprung’s disease, children are monitored closely for surgical complications such as enterocolitis, anastomotic leak, complications from bloating, bowel obstruction (blocked intestine), or a narrowing of the bowel (stenosis).
In addition to surgery, we incorporate medications, diet, activity and lifestyle changes depending on a child's underlying diagnosis, associated anomalies and overall lifestyle. Hirschsprung’s disease requires lifelong management to monitor for problems like chronic constipation and other digestive problems. Our PACE Program team works with families to establish a successful bowel management program in the years following surgery so that a child can lead a normal, healthy life. This may include anything from antegrade colonic enemas (ACE), used to irrigate the bowel from the top down, to making sure children have the accommodations they need at school and in the community so they can thrive. - Наука та технологія
My son was diagnosis HPD. He is waiting for surgery. Pray for us. I'm so afraid for his after life.
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)
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.. :/
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
Did he have long segment? Is that why the bag and is it a ileostomy or colostomy? Hopimg its reversed by now and wats the results? As my daughter has the same
My son have the same problem any1 know a good doctor that my son need good treatment with out bag
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.
I had this
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I’m 9 :/ I have it
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