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Hirschsprungs Awareness Month

Children's Health Health Hirschsprung's Disease Jasper Rare Diseases

This month marks the first ever Hirschsprungs Disease Awareness month - so I'm doing my bit to spread awareness of Jasper's disease.

Many of you already know, earlier this year our gorgeous blondie boy was diagnosed with this very rare disease. Usually picked up within the first few weeks of life, he managed to get through the radar and with his late diagnosis came its own problems. 

Hirschsprung's is considered a rare disease affecting 1 in 5,000 births (4 times more common in boys than girls!). Basically, it's when the ganglion cells, that move poop through your intestines, are missing. In Jaspers particular case, he is missing these cells in 25% of his large intestine.⠀

HD is difficult to recognise as its initial symptoms can be quite common. A major first sign can be failure to pass the newborn meconium (first black sticky poo) within 36 hours of birth. This should be noticed by medical stuff, but in our case, it wasn't. Other ongoing symptoms include lazy feeding, bloated belly, green vomit, chronic and severe constipation - quite an unpleasant and painful existence.⠀

Proper treatment of this is a surgical removal of the problem area. Depending on the case, it can also mean a colostomy or ileostomy. Jasper's 'healthy' bowel has been stretched to its capacity due to his late diagnosis and he now has a ileostomy to try to save it. 


I'm not going to write a huge long post on here, but if you're interested and would like more information, head to our instagram and click on the black posts. 



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