Hi, I’m Angela
My daughter Isabella has HD, she has a colostomy. The surgeon is saying it’s short segmented, but we won’t know for sure until her pull through. She was diagnosed at 5 days old. We hope to have her pull through when she is 7 months old. We also have a son who is 21 months now. He is healthy.
We have never heard of this disease until now. We are concerned that if we have more children they may have it as well. Isabella seems to only have HD. She is healthy in every other way and is the cutest 8 week old I know.
We want to learn as much as we can about HD and get involved with the community. I think it will help us both with how we deal with her diagnosis.
Hi
I have a 5 month old baby boy with Long segment Hirschsprungs, currently doing really well, weighing 17lb11oz. He is drinking 4 (6-7oz) bottles a day, and get a continuous feed over night (500-700mls) to make up the quanitity for that day. We will have to start thinking about solids in a months time, scares the life out of me, any advice?
Hello im ubaldo and i was diagnosed at 18 days old with hd. Had a colostomy done at 18 days old and still have it at age 25 , i want to learn what my options are and everyones experience.
Hello everyone, I wanted to give you an update on my grandson, Gaven, born on December 8, 2007. He saw his surgeon last week and he’s very happy with Gaven’s progress. When he was born, he weighed 8 pounds and while in the hospital lost weight, as newborns often do. When he went home from the hospital he weighed only 7 pounds 11 ounces. Gaven is now well over 10 pounds. The surgeon wants to see him again in 6 weeks. We don’t know when he’ll have his pull-through surgery yet. Fortunately for Gaven, only 8 inches of his large intestine is affected, so we’re very thankful. Reading all of your posts has been such a source of support; thank you. Let’s all keep in touch and I’ll keep you posted on Gaven’s progress. Debbie
THANK YOU CHRYSTAL.
My grandson is only 71/2 months old.He had a pull through at 3- 4 months old.they removed 6- 8 cms but unfortunately on the last biopsy they left some of the disease behind.He is thriving but as I say poohs all day !
I’ll get my daughter to look at you site and have a chat.
I’m grandmother to 5 day-old Gaven who was diagnosed with HD when he was less than 2 days old. The surgeon did the biopsy and performed the procedure for his colostomy. Gaven is doing very well at this point and my daughter and her husband MAY get to take him home next week. We’re not sure when he’ll have his next surgery and we’re not at all familiar with all the “lingo” that goes along with HD. My family and I would be very happy to exchange information and experiences with all members. All of you will be in my thoughts and prayers. Debbie
Welcome Melissa!
My son had a one stage pullthrough too…no ostomy. Chase was EBF until nearly 6 months and I think it really helped keep him healthy post op. He is now 8 months and on tons of solids. He pooped constantly after his operation and the poo was acidic. His diaper rash was terrible but we quickly found out about Ilex and it has been a life saver for us. His bottom is usually snow white and healthy. Chase had 11cm removed and our doc told us it is just regular old HD, not SS or Ultra Short. Each kid is so different but we have always struggled with frequent stooling. We just try to feed easy to digest, non constipating foods to keep his stool soft. Compared to a lot of stories I hear I feel like Chase is really doing well. He was pretty colicky after his surgery but it stopped around 3 or 4 months. I’m glad you found the group. I remember what a relief it was when I was able to connect with other parents of HD kids!
Jo
Hi Melissa,
I live in Orlando. My daughter Isabella has a colostomy. She was diagnosed
at 5 days old, had her surgery at 7 days. She has an appointment with her
surgeon in December to schedule he pull thru surgery (hopefully in
February).
Where did your son have his surgery?
I was told about two weeks after Isabella came through he treated another
boy with HD, so I wonder if that was you.
Aaron & Angela Hanke
Hi everyone,
My name is Melissa and my youngest was diagnosed with HD when he was 5 days old. He had the typical first 48 hours of life of an HD kiddo: no meconium, stopped feeding, throwing up bile… He had a pull through surgery at 10 days old. He did not need an ostomy. I think he had about 5 cm taken. To be honest I have not asked too many questions of the docs up to this point; mainly because they made it seem so simple and that once the surgery was done life would be ‘normal’. I started looking for info because he has a terrible diaper rash that is unlike any I have ever seen - he’s my 3rd child so I know a thing or two about diaper rash. We even went for his dilation appt yesterday and the surgeon wouldn’t do it because he said the rash was too bad. When I questioned if rashes like this were common with HD kiddos he didn’t seem to think that was the case and thought it might be a yeast infection. I politely disagreed, and thought I’d go looking for answers myself.
I am not sure if Matthew has US or SS, like I said I haven’t asked too many questions until now. He is gaining weight and doing great other than being a bit more gassy than my other 2 were and more sensitive to acidic foods in my diet - he is exclusively breastfed - and then of course the bad diaper rash. He does poop a lot, but it never stood out as too much different from my other two either. Breastfed babies do poop a lot and I remember my other kiddos having similar BM’s.
I am in the Orlando area and would love to hear from any people in Orlando. I am now curious as to what the future holds for my little Matthew and what to possibly expect in the coming months. I am so thankful for finding this group and hope to learn a lot about how to help my little guy.
Thank you!
~Melissa
Hi Angela welcome! It’s me Janel (from myspecialone blog). I am so glad you found us here.
Janel
Feel for you lisa, my 1st born was undx for 8 months and was only dx after his intestines ruptured and he was… well dying. it was exploritory emergency surgery ( slice and dice to see what was going on)
My 2nd born was dx at a week, but I had told the Dr’s what it was as soon has he started to throw up his feeds at 24 hrs old.
It sucks so much that your son had to wait that long for a dx, i hope that soon they will have him all fixed up and feeling better.
Hi Lisa,
Different extremes are picked up at different times, I was fortunate that Joshua was picked up within the first 5 days, but he has Long Segment HD, he has had an ilestomy for his whole life (6months old now). I know it is scary, but it is manageable. Let me know how he is after the operation.
You are in out thoughts
Lisa, I can’t be of too much help as far as the medical specifics go because my step-daughter has only been with us F/T for the last few yrs, but I know it took about 9 mos for her to get a proper diagnosis of HD and she also had to have a colostomy for quite some time. Unfortunately, she is one of the rare children that the pull-through surgery did not completely help, but she is 8 1/2 y.o. now and doing great since getting a stoma 2 yrs. ago. She struggles with being the only child she knows with HD, but she is healthy and vibrant and HD does not stop her from anything she wants to do. Hang in there, I know it’s hard to feel so helpless for your child right now, but trust me, he does have a bright future ahead of him and HD doesn’t have to stop him from living a normal, happy life. This site will bring you a lot of support and information, so keep coming back!
I am Connor’s mom and Connor was just diagnosed with this disease this morning. He is a 2 yr old big ball of sunshine who is in so much pain because the doctors hadn’t picked up on this until now. I see most postings were for children anywhere from newborn to a few months old…it really breaks my heart to wonder why my beautiful baby boy has had to suffer with this for over two years.
He has a biopsy scheduled for this coming Tuesday (we are Friday now) and I have not had much time to let all of this sink in. Any information/tips would be most appreciated as he will surely have a colostomy for a minimum of 4 months.
Thank you.
I am Anuj’s mom, now 10 months old with total colonic hirschsprung disease. He was diagnosed at birth and had his pull-through at 5 months (Sept’2007).
Looking for other parents with same challenges and knowing how other kids are growing with it.
hi Im from ireland my wee grandson was born sept 2005, with hd, he was operated on at 6 weeks old short seg, he was doing well, now at age 2 he is not able to poo anymore, my daughter and her hubby have been up in hospital the past few months and still no results, despite fact he had every test done, finally they gave hin the botox injection, it worked for 2 weeks, now wee lad is not going again, has anyone any advice or similar problems, would apprecite, even his diet was watched,
thanks Pat to wee francis aged 2
Hello, my 4 y/o has this disease. I’d love to hear your experiences and share mine.
Hi everybody,
I live in Burlington, Ontario - Canada, our son is 6 weeks old and was born with HD, he did not pooped at all from the very first day, he was diagnosed with hd after the biopsy came back positive. He went through a pulldown procedure in the last week, it was a very long operation almost 7 hours. one day after the procedure they had found that he was not urinating from the tube which they inserted in his penus,they tok him back to the OR and inserted another tube near his billy button. after 5 days they sent him back home with a lot of pain beside a severe diappers rash.
Hi! My son is 4 and has Hirschprung’s. He was diagnosed immediately after birth. The pull through was performed a month later. He isn’t completly potty trained yet, due to recurring diarrhea.
Hello
My niece Ann tragically died from “septaecemic shock” arising from (non-diagnosed) “HD” - at the age of 14 in Ireland on 20th April 2012.
The Inquest will be held on 4th November 2013 in Ireland.
She was diagnosed all her life with ‘mild constipation’
We are absolutely heartbroken, and wonder if it would have been normal for the hospital to have conducted tests during her several hospital admissions to determine if there was another cause to her chronic and severe constipation, or if HD is very difficult to diagnose…
Any guidance would be most welcome…
We have to prepare for the Inquest, and we are only just becoming aware of this condition now, following the autopsy report which was the first time we had heard of this condition.
Would it have been reasonable to expect that this would have been diagnosed - or at least eliminated… during her lifetime
The entire length of Ann’s colon was found, in the post mortem, to have been grossly distended and ulcerated and compacted and etc. It does not bear thinking about.
We just need to understand what happened, and if there was a diagnosis, could she have been saved.
Any information you give will be much appreciated…
Thank You
Mary
Ann’s Aunt.