Thank you for discussing the rare disease my son has. Unfortunately he has ongoing post-surgical issues that we were unprepared for, because we were told surgery was the cure. I feel you may have misinformed families with a newly diagnosed child. It may be more accurate to say that the surgery is life saving, but the disease is still there. People with Hirschsprung’s are at greater risk for enterocolitis the rest of their lives. Potty training can be more difficult. The bowel might not function normally. Your child may need to see a motility specialist in another city. The diaper rash can be very severe. I would not characterize my son’s life as normal so far and I wish doctors would have been more forthcoming with information. It is not helpful to give parents rose colored glasses in this case. Rather arm us with info for follow-up care so we can be pro-active for our children.

I think maybe the Doctors just touched on the subject Hirschsprungs Disease, but I guess it would be misleading to the mother writing in about her childs disease. I too have a child with HD and although he is one of the fortunate ones who has so far only had one surgery taking out about 30% of his colon his BUT let me tell you our daily life is far from normal:( It wasn’t mentioned that there are a few different types of HD either like short segment or total or long segment, and the fact that a there is a percentage of people born with HD that also have other syndromes like Downs, Dwarfism…those are the main ones I recall . Anytime my son gets the flu bug he usually ends up in the hospital due to dehydration, he tends to get dehydrated very quickly becasue of HD. My child also deals with constant smearing, this is the norm for us and we’ve dealt with it best we can…BUT my son is one of the few that has done pretty well…Hirschsprungs needs so much more awareness, I won’t go into long details but we were actually sent home with gas drops after an ER visit questioning his distended tummy and explosive poos, this was after a week in the NICU…..My son had every single symptom and it was STILL not discovered the whole time he was in the NICU! This is sad and I just hope we can get more awareness out there so doctors don’t over look the signs of HD.

hi,

my 5 year old son has short segment hirschsprungs.

After my son was born he didnt feed or poo and less than 24 hours started vomiting up brown.

The midwives, due to lack of knowledge, thought he was just bringing up what he swallowed before he was born and wasnt feeding due to a tongue tie and they werent going to investigate because one normally worries after 48 hours….

Then his tummy started to bloat, then he started to bring up green bile.

On day 2 his tummy was so distended that it was starting to go see through, they did an xray and saw that there was a blockage so he was transferred to another hospital.

we were only there for a short time when they rushed him up to surgery, they opened him up to find that his bowel had peforated, due to the damage he was closed up but given a colostomy bag.

He then had his pullthrough at 5 months old and then closure at 7 months old. but he had complications with the closure and a day after he started to vomit green and swell up again, he was rushed into surgery again and re opened and thankfully they fixed the problem. All up he was dilated with a medal rod 3 times a day for a year. Not an enjoyable experience for him.

After all that he is one of the lucky ones, now on your show you make out that one surgery fixes it all, well maybe a couple of kids yes but most of them no. I have met through Faceook over 550 families who are linked to the disease, most of them still have issues eg. they have ostomy bags, have a lot of issues with foods, get entrocolitis, severe rashes on their bums, have problems with control and spend time in and out of the hospital, have daily washouts, enemas, take medication etc.

So before you down talk a disease, please get information from the surgeons and most importantley the parents and children who deal with the disease and please dont just google it from the internet

I think it’s great that your show had a segment about Hirschsprung’s Disease. However, I don’t think it’s great that you downplayed the lifelong affects HD has on most, if not all, children.  Yes, surgery fixes the problem, but does NOT cure Hirschsprung’s.  My son was diagnosed with HD at 2 days, had surgery at 2 wks. He only has short-segment and had a successful surgery. He had 1 episode of entercolitis at 2 mths post-op. He is one of the lucky ones who didn’t/doesn’t have a lot of problems, and I feel very blessed for that. However, he is hardly normal. He is now 6 and has problems with control.  Yes, he looks normal, and can do normal things that a 6 yr old can do, but I don’t classify a 6 year old with bowel control problems “normal.”  I think your show did a horrible job of describing life with Hirschsprung’s. Maybe next time you could talk with people that actually live with this disease every day.

Thank you for  discussing Hirschsprung’s Disease on your show.  I have to say though I beieve you missed the mark this time.  My grandson was born with Total Colonic Hirschsprung’s Disease or long segment HD.  For him this is an incurrable life long , life threatening disease.  He was born with only 75 cm of functioning small bowel.  He is 2 1/2 years old, has an ostomy and a PIC line.  He was until recently on nightly intravenous nutition (TPN) and now gets nightly intravenous fluids to try and combat his constant dehydration.   I also know from the many groups I have found via the internet that there are so many other children and adults like my grandson, who are not cured with one simple operation.  In fact in his short life so far, my grandson has had 4 surgeries and several other procedures.  His diet is different than that of a typical child as is his restricted fluid intake.  We don’t know at this point if he will be able to attend a public school because of his intravenous line and ostomy bag that needs to be emptied every 15 minutes or so and changed sometimes up to 8 times a day.  Because everything that he eats comes out so quickly, he also needs to be eating almost all day. We were told when he was born that if he had been born 5 to 10 years earlier he would most likely not have survived.  

It would be wonderful this the disease could be discussed again on your show, however perhaps by someone who specializes with the more sever forms of the disease.  Awarness of how truly horrible this disease can be would be appreciated.

I will say thank you again for your mention of Hirschsprung’s Disease. Although what was aired was what we were told at the hospitals, and doctors offices here locally, I have learned from the posts from the parents of these other children, what kind of cream I need to find, that I need to find someone who can help my daughter figure out a diet that will be compatable to my grandsons needs, that  we need to be finding some probiotic’s. Most of all we need to find a Doctor who knows something about this disease. Thank you to each of you who has posted we don’t feel nearly as lost as before.  I’m praying daily for all these children

Please watch this….

http://www.youtube.com/watch?v=CAZdxMWJ6jU

The link i just posted is a video about my son and his battle with HD. I have tried to email but they either arent going through or are being unanswered

Dear “ourHDbaby”  if you would like to talk to more grandmothers and mothers of chldren with HD there are several groups on facebook where you can get wonderful support – HD family; Short gut syndrome families ….  

Terry – grandmother of the most amazing and beautiful TCHD toddler!

I am a mother of 6 yr old with long segment HD.  She was diagnosed at 9 days old.  She has had 4 major surgeries, a colostomy, and an ileostomy for the last 3 yrs.  Surgery did not fix her and her road with this disease is far from over.  I felt like you drs. made this disease sound like it is not a big deal and there is an easy fix for it.  Very disappointing coming from a parent who has seen her child struggle with this awful disease.  She has 2 more surgeries ahead of her and it is scary to not know the outcome.  Every case with this disease is different.  Would love to have this disease explained correctly on your show, by a doctor who deals with HD patients daily. 

Firstly, I am listening to one of the Dr.’s speak and he starts quetioning “What…the first 24 hrs they should have their first bowel movement?”  Then he refers to the stool as poop…the Dr. on the left seems to be the more knowledgeable. 

My son was born with this very complex disease and there are varying degrees of it.  SO SAD that such a reputable medical show completely DOWNPLAYED this disease.  I haven’t met one child that has gone on to have completely normal life.  They struggle with their motility often.  They tend to store bacteria more so than other children, making illnesses last a longer etc.. 

I would hope the research improves and do the Hirschsprungs community a favor and do the research.  Talk to people who are living with this!!!