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Nelson's Story
We're from Melbourne, Australia. Nelson (now 18 months, the photo is 11 months has Hirschsprungs - suspected on day 2, confirmed on day 3, colosotomy on day 3.
We're lucky to live near a large teaching children's hospital with surgeons that are highly experienced and skilled at treatment of HD. The pullthrough (Soave) and closure was at 3 months. All went well for a week or two, then stricturing and swelling at the Soave site caused constipation, then throwing up etc.
Back into hospital, dilatation under anaesthetic, then daily dilatation at home followed, but problems persisted. After another week or two, it was back to hospital and another colostomy. A bit of a relief really, as he really thrived again after a period of being rather unwell. Managing the colostomies has been fine, with a few leaks occasionally - especially when teething - apparently this is normal. A narrow ring of "Eakin" seal around the stoma seemed to solve most problems.
The latest colostomy was closed when Nelson was about 10 months old , and so far all is well. Lots of poo! (and still quite frequently - the novelty has worn off!). Nelson was somewhat surprised at having to use his bottom, but is happy and recovered really well from all the surgery. He has developed a bit of diaper rash at times, but this has been manageable with various butt pastes. He has been hospitalised a couple of times since the closure - once for dehydration caused by rotavirus (watch out for this - it happens very very quickly) and once for a severe allergic reaction.
Nelson has allergies to dairy products and eggs, and sensitivities to one or two other things like some stone fruits. At 18 months old - he's into everything, especially saucepans and climbing!
Richard & Carina Alder