Hirschsprungs-Disease

This topic contains 10 replies, has 7 voices, and was last updated by  MummyPanda 3 years, 5 months ago.

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  • #10428928

    holley31
    Member

    My son was born with Hirschsprungs disease and had the pull through operation at about 2 1/2 weeks old. He is now 4 1/2 and doing well. We’ve had a few ruff times but were getting there now. If anyone would like to chat please feel free to leave me a message.

    #10428929

    lin
    Member

    I work with a lady who has a child with downs and hirshsprungs. Her child also had the pull through surgery which was not successful. She is pretty much constantly soiled and her mom has to rinse off her bottom several times a day to keep her clean. Always having stool on her bum is causing horrid diaper rash, im not talking regular old diaper rash I mean open wounds. Does anyone have any suggestions for this mom?

    #10428930

    i-am-pregnant
    Keymaster

    Hello, I came across this not realizing it was as common as I thought. I wanted to let anyone know my Father has had Hirschsprungs his whole life. He turned 50 years old this year. It hasn’t been easy, I have been through it all with him, have so much knowledge and understanding of the disease. If I can help with anything, please message me.

    #10428931

    emma1979
    Member

    Hi there,

    I have a 2 yr old son called lachlan – he has short segment hirschsprungs disease. He is doing really well. I am also due to have another baby boy in august. Im from sydney and would love to chat

    #10428932

    jun2103
    Member

    Wow I see Nobody kid hardly has hirschsrpungs! My 2 1/2 year old has it. He has his surgery when he was 3 months old. We had to irragate him 6-8 times a day until he had his surgery. But hes all better now. Minus the fact that his stool is hardly ever hard. Hes has diareah pretty bad all the time. We have found that he cannot do natural or regular sugar. A lot of that will make him sick. It would be nice to have someone to talk to that is in the same shoes at me. We also have a 5 month old too. So I have my hands full. I have been trying to potty train my 2 year old but because of the hirschsprungs and the surgery he is very irregular so its hard to get him to understand. Ugh… One day!

    #10428933

    MummyPanda
    Member

    My 11 month old son was diagnosed at 5 days old after a failed pull through a stoma a cecostomy tube and a mic key button and 3 major operations my son is finely on Botox an doing great .. Anyone with hd or family or children with hd that are looking for support go on to Facebook and search Champs Appeal although its based in the uk the support on the site is amazing and I’m happy to say Champs Appeal is also now a registered charity !! Please go and like 🙂

    #10428923

    i-am-pregnant
    Keymaster

    Hirschsprung`s-Disease

    #10428924

    i-am-pregnant
    Keymaster

    hi my son was born with this condition on 22 june hes home but has a nurse come flush his bowels out once a day and on august 5th hes having an op to cut out the bowel that has no funtion.

    #10428925

    My son MAY of had Hirshsprungs. He was in the hospital for diarrhea and had a central line placed in his arm, even though he survived surgery he passed away about an hour later. I miss him so much. Pls read and look at my pics of Max. it’s been 3 month as of yesterday ,

    #10428926

    i-am-pregnant
    Keymaster

    My twin boys were born 4th july. Twin A has been diagnosed with Hirschbrungs. We are now home and doing bowel washes ourselves until he fattens up and can have the surgery.

    #10428927

    i-am-pregnant
    Keymaster

    My son had his operation on the 4th August. He had 10cm of his bowel removed. He is doing well and improving each and every day.

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