my little boy passed away september 19th 2008 i couldnt save him but if i can help someone else come to terms with potters syndrome and the death of there baby i will please email me as i probably kno everything there is about this awfull problem there is not much out there but it has helped me to know the facts and possable treatments for potters please mail me on harleighs site. (find harleigh flowers) all my love hollie x x
RE: potters syndrome/renal agenisis
Hi Hollie, our daughter georgia was born not long after, october 9th 2008, at 35 weeks - no knowledge during pregnancy, i had no amniotic fluid, she was resussed then intubated at birth and taken to nicu in the city. she had an enlarged tummy and they werent sure, but two days later got the diagnosis of Autosomal Recessive Polycystic Kidney Disease, basically both kidneys were full of cysts, not funtioning and making it hard for her to breathe. it was a miracle she survived, they started dialysis on day 5, not really knowing how successful it would be but they were willing to do it. long story, finally a second cardiac arrest took our baby girl when she was 6 months and 1 day old, on april 10th this year. one of the first diagnosis was potters, and i started to read about it, but she didnt have some of the typical features, but basically i think its kind of the same, being low or no amniotic fluid, due to low functioning kidneys and not growing the lungs. I am wondering how did they diagnose your harleigh for sure? what follow up did you have? we are seeing a geneticist next week, but its basically a recessive inherited condition and we were both unknown carriers and she had a 1 in 4 chance of getting both genes, our other daughter is ok, but she may be a carrier. i am sorry the doctors didnt want to even try dialysis? were his kidneys enlarged or functioning at all? if you'd like to talk some more about this please do, did you have any other feedback from others about this disease?
RE: potters syndrome/renal agenisis
hello thankyou for my message, im so angry that the hospital did not wish to take harleighs treatment further, still to this day i havent been able to grieve as im so angry at the hospital, i even said to them if they wanted to try anything new on him i will give my consent, as if it hadnt worked for him it might help other babies in the future. were abouts are you from? from you message i thort you could be from the states? i had thort of going there to have him but with no funds it would have been impossable. reading your letter has helped me to know that there are babies still dying because of this condition and it sickens me. i just wish they would try a little harder because it would cause a lot less upset to know there trying, i am the same and have a little girl who is a year older then harleigh and ahe was fine just not much ammo fluid, i hope you feel better you have someone to talk to that understands how hard it is, best wishes x
RE: potters syndrome/renal agenisis
Hi Hollie, I am at peace with my daughters treatment, there is no 'cure' for her disease, and i was just cruising along with a good pregnancy to not suspect anything such as low amniotic fluid, but I would've thought the obstetrician would've picked that up a week before I delivered, I am yet to follow that up, still, no cure for that. I know what you mean though, you just wish there was something more that could be done, and you just hope that they're not holding out on you, but I have learnt, that they are the experts, but we still need to advocate for our kids, that's our jobs. I am in Melbourne Australia, and believe we had the best hospital taking care of her. have you talked to your nephrology (kidney) docs for any answers? we might test for her genetics but probably wont have more kids. my email is kate.emry@yahoo.com
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