Hirschsprungs Disease

Marni - posted on 09/03/2016 ( no moms have responded yet )




Hi guys
I wanted to share my story with you - to support other mum's going through something similar. My daughter was diagnosed with Hirschprungs at 2 weeks old, and after bringing her home and carrying out "wash outs" for 2 weeks she had surgery for a colostomy bag at 1 month old. During this surgery they established she had long-segiment hirschsprugs so had to remove her whole large intestine. She had the illeostomy bag for around 21 months, when the pull through was carried out. In that time we had several hospital visits, her stool would be super loose and she would quickly get dehydrated. But on a whole it was okay!! You get used to managing the bag, and she was a "normal" active baby who met all her milestones as usual. When she had her pull through it was another adjustment, Ilex skin protect is a Godsend for the nappy rash. You have to get used to the fact that your childs stool will always be loose, and they will need to go several times a day. My daughter is now 4, she uses the toilet and has full bowel control. Some days her stool will be super loose (like water), however she has not had to go into hospital for almost one year. When she was last admitted she was constipated, and after a few days of wash outs she was was absolutely fine.
I know if you have just had a child diagnosed it seems like an uphill battle, I have been there! I read every horror story till the point I would lie in bed sobbing, but in all honesty you will manage this!! At times it is hard, but it never lasts for too long and your baby will be up and active in no time! Message me if you have any questions - I hope this helped someone x

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