my 3 year old brother has hirschbrungs and is suffering badly at the moment and it kills me to see him wasting away day after day in that hospital bed espcially since i don't understand whats causing all of this.
he was diagnosed at 11months but the damage was pretty severe so the gave him a colostomy bag. sice then he's had two reversals. the first just didn't work so they gave him back the colostomy for a year to let him gain strength etc etc. but in nov he went back in and had the second one. things went horrifically wrong and we nearly lost him a couple of times, we;re extremely lucky he held in there and is still with us but now the adhesions are causing big problems for him. he's had about 30 surgerys since birth over a dozen of these were major surgery, he's been revived twice ,been on a ventilator and life support more than twice and had collapsed lungs among a heap of other problems and i just don't understand it at all. why does this condition cause sich severe problems and why are there such limited options??
sorry if i'm asking alot of you but it's sheer desperation at this stage. i don't want to lose him and i just want to have all the information possible on this condition.
thanks for taking time to read this and if you decide not to reply thats totally understandable because i'm sure you're having enough problems dealing with this yourself.
thanks again jess (dublin, ireland)
-- jess (Dublin, ireland)