lillyloo2
03-05-2008, 01:10 PM
i am just trying to get some info on infantile pckd as my unborn baby has been diagnosed with it and i have been told that the outcome will be that my baby will die can anyone give me any info on success stories were babaies have survived.
Sponsor
feelbad
03-06-2008, 12:26 PM
is this actually PKD and not pckd?just wondering since i have never heard of pckd,but i have PKD.polycystic kidney disease?did they say anything about this being a resessive disease?just need to find out if we are actually talking about the same thing here or what exactly pckd actually stands for.it would really help to know.Marcia
lillyloo2
03-07-2008, 04:48 AM
yeah sorry for some reason the docs said it was pckd but it is pkd and its is the recessive one .
feelbad
03-07-2008, 11:28 AM
i have to ask if you have really researched this at all?if you have,you know that having the recessive form in an unborn,well,the odds are not good hon.i hate to tell you that.just how enlarged are the kidneys?there is the autosomal dominant type and the recessive type.kind of the same but also very different in just how they actually present and what takes place when this is found in an unborn child.just what have your doctors told you about the baby so far,any new therepies or anything availiable?i really am sorry this was found in your child.as you are already doing here,you really need to do your research on this.there is ALOT of info out there on it.i was kind of hoping that they had come upwith something new to try and be able to treat this some way in newborns.i researched both types back in 99 very heavily when my son(he was then 12 and had just presented with liver failure) was Dxed with the autosomal dominant type then so was i.i know the info i did see on the recessive was very sad and very dissappointing.it sounds from what you were told that not alot has actually chaneged in this area,for that,i truely am so very sorry.have the docs given you ANY real hope at all for a different outcome,any?marcia
lillyloo2
03-08-2008, 10:57 AM
it is the recessive type and the kidneys are 3 times the size they should be for a baby and they dont work at all so i aint got no amniontic fluid either. iv researched it and i agree the outcome doesent look good but iv still got hope. the docs said that if the babys lungs are ok which is unlikely due to there being no amniotic fliud then they could try dialisis but its unlikley to work as it doesent very often in babys im just tryin to find out any cases were the baby has survived i havent found any so far which is a shame. the docs dont have much hope for this baby and they dont really want to help aas they say its not cost effective when the odds are so slim but iv got hope for this child and im gonna fight all the way and get all the care needed for this child if then it dont survive then at least iv tried my best.
feelbad
03-09-2008, 01:12 PM
honestly,i just really don't know what to say or what to tell you hon other than i really am so very sorry.as moms,we DO want to do everything we possibly can for our children.i have been down the same road you are currently on but i lost my baby at around four months and we never knew why.but this was before we ever knew we had the PKD running in our family.my youngest son actually presented one day with vomiting blood at school. from that day on it was a freaky nightmare.that is when we found out all about this crappy disease.it was killing off our sons liver a bit everyday from before birth,we just didn;t have a clue.
now,when looking back on that devistating loss,i really have to wonder just what may have been really wrong with that baby,considering how bad our then 12 year old was(full liver failure with transplant and PKD),you know what i mean?what 'could' have been going on.i know this is probably the most horrible thing that has ever happened in your life,and i really wish there was more i could do to try and help you,really i do.but i really do think that you ARE right now,doing just what you stated above,doing everything that you possibly can considering the circumstances.there are limits on just how much we mere mortals can actually do in certain situations but knowing that you DID everything that was humanly possible for your child,and i really think you have hon,that has to count for something ya know?i really am so very sorry for what you are having to go thru.i wish i had more answers for you.
just know that someone in Mn is thinking of you and saying a prayer for you and your baby.i really do hope some miracle happens for you hon.i don't know if you are a religious person or not,i do believe in god and things happening for reasons that we sometimes find out the reasons for and sometimes we don't,but handing this over to god and placing it in his hands may help right now.i am just at a total loss here as to what to tell you lilly.other than i really do feel for what you are going thru and hope you can eventually find a sense of peace with this.you HAVE been doing all you can.don't ever forget that okay?and i am sure your baby feels that.take care lilly,and please let me know how you are doing.i really DO care.Marcia
now,when looking back on that devistating loss,i really have to wonder just what may have been really wrong with that baby,considering how bad our then 12 year old was(full liver failure with transplant and PKD),you know what i mean?what 'could' have been going on.i know this is probably the most horrible thing that has ever happened in your life,and i really wish there was more i could do to try and help you,really i do.but i really do think that you ARE right now,doing just what you stated above,doing everything that you possibly can considering the circumstances.there are limits on just how much we mere mortals can actually do in certain situations but knowing that you DID everything that was humanly possible for your child,and i really think you have hon,that has to count for something ya know?i really am so very sorry for what you are having to go thru.i wish i had more answers for you.
just know that someone in Mn is thinking of you and saying a prayer for you and your baby.i really do hope some miracle happens for you hon.i don't know if you are a religious person or not,i do believe in god and things happening for reasons that we sometimes find out the reasons for and sometimes we don't,but handing this over to god and placing it in his hands may help right now.i am just at a total loss here as to what to tell you lilly.other than i really do feel for what you are going thru and hope you can eventually find a sense of peace with this.you HAVE been doing all you can.don't ever forget that okay?and i am sure your baby feels that.take care lilly,and please let me know how you are doing.i really DO care.Marcia
lillyloo2
03-13-2008, 05:42 AM
thanx marcia thats really nice of you its nice to know people care and i do believe in god and i have placed it in his hands but there are just days when im so lost in grief that i forget to have hope and to trust im sorry to hear you lost a child at four monthes i have also lost a child at 5 and half monthes i think thats why im havin such a difficult time excepting what might happen to this child i just dont get why i have to possibly lose another child but like you said we dont always understand why things happen in life maybe one day i will but for now i will trust god and what ever decicion he makes thanx again for replyin to me its nice to be able to talk to sum one who has had an exsperience with this condition i will keep you posted on how things go iv only got about 5 wks left before i have a c section then we will no what is to be lilly x