I Have a Son With Hirschsprung's Disease

Personal Stories, Advice, and Support 46 People

    Austin's Story

    My son, Austin was born on January 13, 2008. He came out right on his due date absolutely beautiful, and perfect. He was slow to feed, but the nurse's assured me that he just needed to learn how to suck, and probably still had fluid in his belly. Having already had a baby (Robbie...
    Jwhackers Jwhackers
    22-25, F
    10 Responses Sep 22, 2009

    I have a 3 year old with Hirschsprungs.

    He had his pull through at 3 months old and did great for 2 years with the exception of a few infections. For the past 8 months he has had issues with not being able to pass stool or gas on his own. We have tried a crazy amount of medication to kick start his colon again but...
    Doubtem Doubtem
    31-35, F
    2 Responses Mar 7, 2014

    17 And Have Hirschsprung Disease Hd Living It Well!

      I'm 17 and I am in highschool. I've had this disease since birth, and my parents have always treated me as a ''normal'' child, which has enormously helped me to act and think like a regular child. Of course I have issues holding for too long, but I get used to it, I can...
    theredbaron95 theredbaron95
    22-25, M
    3 Responses Sep 16, 2012

    My Son Has Hirschsprung's

    Nicholas was born December 18, 2006, six days early via a planned c-section. He seemed perfect except that he never passed his meconium, and didn't seem to want to eat. That night the nurses took him to the nursery so I could sleep, and overnight it was determined he needed to...
    MelissaBo MelissaBo
    31-35, F
    5 Responses May 23, 2012

    Yesterday my 9 month old baby was diagnosed

    with hirschsprungs disease. His pullthrough is booked for thursday
    jenmitton jenmitton
    Jan 27, 2015

    My son had two malrotations

    before they found he had Hirschsprungs Disease. The first was at birth and the second was probably around 4-5 months old. We thought we were going to lose him. After his second malrotation he got a terrible infection (c-dif) which required an "exploratory surgery" and it wasn't...
    tilaterese tilaterese
    31-35, F
    1 Response Jul 25, 2015

    My Littl Princess

    my niece was diagnosed with hirchsprung disease and has had a procedure already and my family is totally dumb founded and have no clue what to expect and what type of questions we need to ask can someone please tell me if this is something that is going to effect her whole life...
    worriedaunnie worriedaunnie
    1 Response Jul 3, 2013

    My Son Was Born With Hirschsprung'S! He Past At 2 And A Half Months!!

    Hey i would like to say iam sooo sorry for anyone who has lost a child to this unique disease i also had a baby boy who had Hirschsprung's Disease he went threw a couple of things before they finally decided to suggest surgery. At 2 and a half weeks old they did the surgery...
    CarmenMelo CarmenMelo
    2 Responses Jun 17, 2013

    Son With Hd

    My son was diagnosed with hd when he was about a month old it progressed fast and he had to have surgery at 3 months old to correct the problem he had a a very minor case and it was very a successful surgery we have not had any problems since then and it seems like we dont even...
    livelifefree100 livelifefree100
    Apr 9, 2012

    Im new to this site..

    .i have a son with HD and GDD, he is 3yrs old now, his been through a lot with 6x surgery 6x episodes of enterocolitis, his last hospitalization was january 2014 for enterocolitis but after that till now his doing good, after all this irrigation,enemas, dilatation he is going for...
    jamilavictoria jamilavictoria
    36-40, F
    Oct 5, 2014

    Austin's Story: Update!

    I originally started this group and posted Austin's story. You can read that here. EP Link Austin is now 5 years old and will be starting Kindergarten this week. I thought I might update on how things are going so that other parents helping their children live with this disease...
    Jwhackers Jwhackers
    22-25, F
    1 Response Sep 1, 2013

    Waiting For The Test Results...

    My son is 6 months old and we are impatiently waiting for the biospy results for a possible Hirshsprung disease. I really need for someone to give me a little hope with a positive story about chhildren diagnosed with HD. Since I have stopped breastfeeding (at 3 months), my son...
    melmik melmik
    5 Responses May 28, 2012

    My son is 4 yrs old and was diagnosed with HD

    at 17 days old. He had his first surgery at 21 days old and gotten a colostomy bag. He had a reversal at four months, didn't work so well, had a pull through again at 9 months. He had the colostomy bag til he was a little over 2 yrs when they tried a reversal again, with a 50...
    Rymae87 Rymae87
    26-30, F
    1 Response Feb 4, 2016

    Stools Have Changed.

    My little boy was born on the 15 July full term, but didn't feed or pass stool, thankfully we were airlifted to the mainland where HD was diagnosed, he had a pull through at the end of September which seems to have been sucessfull. Bowels have been working very regularly but...
    shetland123 shetland123
    Oct 10, 2011

    My Little Aubrey

    Are little Aubrey'Once was born on Dec29.08 and his 2nd day born he was in the nursery and I remember the nurses coming to tell me out my sleep they are rushing Aubrey to the NICU, and from that day on we have been in and out of hospitals and different Doctors since and GI doctor...
    alantiz alantiz
    26-30, F
    Sep 28, 2013

    My Son And Living With Hirshsprungs Disease Without Surgery

    Hello, my name is Jerilee and I am 24 years of age. I have a son, Kingsley, who will be 2 this coming December. He was delivered full term at a birthing center in Lakeland, Fl. He passed his meconium just as being birthed-it was a tough labor and luckily there were no problems...
    MamaJlee MamaJlee
    5 Responses Aug 11, 2011

    Hi all, I Have a grown son with Hirschsprung's

    disease and would love to offer support or advice to any other mums out there who need it. Xx
    palmerli1 palmerli1
    46-50, F
    2 Responses Apr 19, 2015

    Grandson With Hirschsprungs Disease

    My first Grandson was born on July 2, 2011.  The day after he was born he was airlifted out to another hospital for tests.  They took him down to a biopsy and came up with a colostomy and was diagnosed about a week later with HD. We then were airlifted out to another hospital...
    kellsterbaby kellsterbaby
    2 Responses Oct 5, 2011

    Hirschsprung's Help

    I was born with full hirschsprung's disease 27 years and have had subsequent surgeries including an ileostomy oct 2010. If anyone would like to chat please feel free to get in touch xx
    nicholaskelson11 nicholaskelson11
    5 Responses Jun 18, 2011

    Forever - 28th Of June 2010 - 20th Of July 2010

    One of my dearest friends lost their baby daughter to Hirschsprung's Disease. We are trying to find any cases of complete infection of the intestinal tract (long segment, I believe it's called. I may be mistaken). There is a less than 1% chance that a child born with Hirschsprung...
    Matt67 Matt67
    22-25, M
    4 Responses Aug 19, 2011

    Hirschsprings Diagnosed Late!

    my son James was diagnosed at the age of three and a half years. He had the pull through, then we had the colostomy due to intestinal rush. Colostomy got reversed two and a half years later. So we continued on again and eventually James got a distal ace (due to more incontinence...
    Mim8874 Mim8874
    Nov 7, 2011

    Ryan'S Story

    My son Ryan was born July 1,2003 at 35 weeks. A tad early but weighing in at 5 pounds. Two days later they told me my son may die. He either had cf or hirschsprung disease or both. He ended up having hirschsprung. He first surgery was at 7 days old. He stayed in the nicu for over...
    Laci2010 Laci2010
    36-40, F
    1 Response Feb 16, 2013
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