Infantile Polycystic Kidney Disease at 25weeks

[StarBright25]

Unfortunately i went for my routine 20 week scan and they thought the kidneys were enlarge but otherwise healthy, tho they were concerned so referred me to a professor. again he felt the same but to got back at 25 weeks scan to check on there progress.

unfortunatley when returning at 25weeks the kidneys had again enlarged and now also the fluid around our son had reduced, again she referred me back to the professor, he confirm it was definately IPKD and that the fluid had again reduced even further within the 2 days between the 2 appointments.

We are now left knowing there is going to be kidney failure and now possible lung problems on delivery, we are now left with the very difficult decision....

do we.... carry on with the pregancy knowing his life will start in constant hospital care or end his misery now??

i really dont know which way to turn.... please contact me if u too are going through this or been through it.

Many Thanks, its a very difficult situation. . . . x

 

[Sarah&Ady]

So sorry to hear this... maybe there is someone on here or in gestational complications who could give some better advice.. you are in my thoughts xx

 

[wellyboot]

Don'w have any experience, but just wanted to send

Welly x

 

[LoolaBear]

hun there is a section called ethical losses where this would be more appropriately discussed for you and little man x

 

[StarBright25]

Cant find link for ethical losses ?!

 

[BabyBoyle]

No experience in this sweetheart but sending hugs and prayers your way.. The ethical losses is in the same subheading as this, but you can't view without requesting access..

Hopefuly some ladies in there will have some advice for you..

Prayers your way xxxxxxxxx

 

[luvnmybumpx4]

Just wanted to send your way hun.

 

[addie25]

Hi. I am so sorry for your situation. I found out my child was going to have cystic fibrosis and we were heart broken. I was 14 weeks when we ended the pregnancy. It was the most difficult decision of our lives. I can not tell you what I think you should do I am just telling you what I did. I did not want my child to spend their lives suffering. I did not want to tell them that they were going to die young because of this disease. I did not want to watch as they stopped breathing and know that I could have prevented this and did not. These are some reasons for why we did end the pregnancy. I miss my baby so much but know we made the correct decision for our family. Again I am so sorry. We are all here to support you.

 

[jojo23]

so sorry to hear this hun i cant imagine having to make such a decision. we lost our baby at 22 weeks and although it was hard i just kept thinking that maybe nature had made a decision for us if something was wrong. i think you def need ALOT of advice so maybe ethical looses as the girls suggested would be of benifit to you!! your in my thoughts and prayers hun whatever you decide xxx

 

[sophxx]

Cant find link for ethical losses ?!

if you pm one of admin or mods they will help its a private forum so not every one can read it you have to request access

hugs to you and your lo

 

[wish2bmum]

I'm so sorry to read you're post and for what you must be going through right now. I have recently had to say goodbye to my little man at 16wks and although I know we made the right decision, no-one could have ever prepared me for the grief and loss I have and am feeling. You have to stay strong and do the right thing for you and your family hun, sending lots of good thoughts and strength your way. xx

 

[StarBright25]

so sorry to hear this hun i cant imagine having to make such a decision. we lost our baby at 22 weeks and although it was hard i just kept thinking that maybe nature had made a decision for us if something was wrong. i think you def need ALOT of advice so maybe ethical looses as the girls suggested would be of benifit to you!! your in my thoughts and prayers hun whatever you decide xxx

i'm so sorry to hear of your loss. its a very difficult decision to make and i'm sure it was no easier for you with the choice taken out of your hands. xxx

 

[StarBright25]

I am so very grateful to recieve your messages and so very saddened by the choices and losses we have all had to face.
Each situation maybe different but feel it is some kind of strange comfort to know i am not the only women to go through this and sadly wont be the last.

We have made our decision sadly to say goodbye to harrison on thursday i know this is going to be the hardest few weeks of our lives. My other son jack is being a great comfort to us.

sending to you all. xxxxx

 

[evasmum]

I am so very grateful to recieve your messages and so very saddened by the choices and losses we have all had to face.
Each situation maybe different but feel it is some kind of strange comfort to know i am not the only women to go through this and sadly wont be the last.

We have made our decision sadly to say goodbye to harrison on thursday i know this is going to be the hardest few weeks of our lives. My other son jack is being a great comfort to us.

sending to you all. xxxxx

Sweetie, I am so sorry

There is no words to make it better but you will find the strength to get through the next few weeks, somehow we all do.

Sending love to you, your partner, Jack and especially Harrison

 

[Weeplin]

I'm so sorry hon that you have to make this decision

 

[lynz85]

Im so sorry to read you have had to made this hard decision. I hope then next few weeks and months arent to harsh on you and your family xxx

 

[kam78]

I am terribly sorry sweetie!!

My niece was born with the same disease... I'm not gonna sugar coat it, when she was first born we didn't expect her to live or have any quality of life BUT must say... She just turned 13 yesterday... She is on medications, and she was taught from early age she was special and has to take care of herself & watch what she eats & how she feels but she has bounced right out of this & has had a "normal" life... She knows in the future she will have to have a kidney transplant but she's ok with all of it.... (( Big Hug! )) And know what you face YOU can make it..... XOXOXO

 

[IHrtSteve]

I wish I had good advise to give you. god bless

 

[jojo23]

so sorry hun i cant offer any advice on the subjcet and can only imagine how hard this decision will b for you but i have a friend who was born with IPKD and she is now 25 and very very healthy!! its somethin you will prob have to come to yourself but i know if it was me i would have given my baby any chance i could have given her to survive and then again i wasnt in your situation,nature took over ours!! best of luck hun and im sorry again to your little one!!

 

[Andypanda6570]

I am so so deeply sorry I just don't know how to get through this, I know it is supposed to be one day at a time, but it just keeps getting harder for me/ Sending lots of love xoxoxoxo