Few weeks back I read the news that in one of the European countries, guru of IA, inventor of PSARP – Professor Alberto Peña did a surgery on 13 year old girl. Cloaca girl with few other conditions.
You might think – nothing special, this surgery is done all the time. Especialy in USA and few other countries.
BUT… in Poland it was the very first PSARP surgery. First time ever.
It breaks my heart to read that this girl was living for 13 years of her life without a chance of fixing what could have been done if she was living somewhere else.
Today I read about boy named Guo in China, who was born with IA and he is slowly dying. He cant pass any poop so his family doesn’t feed him enough. At age 3 months he weighs only 2,4 kg. Seen pictures of him in media. Very scary. His parents are poor and cant afford to see a first contact doctor, not to mention a life saving surgery, of stoma – nevermind PSARP ( pull – tru).
While i read both stories I cried.
AGAIN I realized how lucky and blessed we are for where we are living. I heard a few times by now that if S.would be born in any other place she wouldnt stand a chance. Even in maternity hospital I heard that if I would come to hospital a few hours later – neither of us would have survived.
S. had her pull – thru at age of 7 monts. I have never questioned our choice to have the pull-thru. Im not sure if it was even a choice. It was the only way we have seen back then. Only way of my baby girl having a chance for a “normal” life.
I didn’t even think like some people do “ if you don’t try it, you’ll never know the outcome”. I put all my hopes into it.
Back then I didn’t know as much about life after PSARP and couldn’t imagine that continence is a major issue. For us the hardest part is now the bad diaper rash and figuring out a good bowel management plan for S.
There are days when im upset and feel so bad for S. sore bum, and I admit sometimes I think that it was much easier with the stoma bags…
I heard recenlty – at least you’ve given it a shot, a colostomy is always an option. I dont think it is for us. If anything- enemas.
Eirher way im thankfull we had a chance of saving our baby and improving her life standard with all them surgeries.
I’l Always will be thankfull for the very skilled surgeons that we met on our road: Professor Alan Mortell, Dr Oskar Zgraj, Mr Eradi Bala, Mr Ashok Rajimwale.
If we lived somewhere else maybe I wouldnt write all this…
Be thankfull for what you have.
1: Story about Guo
2: If anyone want/can support Guo’s family and give him chance for life