Infantite Polycystic kidney disease at 25 weeks

[evasmum]

Hi ladies, I hope you are both doing as ok as you can

There is a TTC thread on the Stillbirth, Loss board, deciding to TTC after a loss is hard. There is lots of girls on that board who had babies within a year of the loss of their precious angel.

Me and my husband had scans on our kidneys too, again it is a formality to rule out the Dominant version, but it is very unlikely because it is more usual to have family members who have it too.

Sending

 

[rachel9174]

i am 23 weeks along and was told the same thing yesterday, i am terrified for my baby... but i don't believe its over yet and just keep praying the doctors are wrong.

 

[StarBright25]

i am 23 weeks along and was told the same thing yesterday, i am terrified for my baby... but i don't believe its over yet and just keep praying the doctors are wrong.

i deeply hope they are wrong too hun, all the best & big hugs. I hope you are given good news. xx

 

[clauzozo]

Dear Moms,

I lost my beautiful son 5months ago due to PKD and I am still lost and heartbroken. At my 24 weeks US they told me I don't have enough fluid the normal is 15-24 and I had 4, his kidneys were enlarged, he had multiple cysts in his liver and his lungs were not functioning. I was devastated. I was in denial. I saw the best Doctors and they told me the exact same answer, my baby will die. At 27 weeks he passed away on October 21st and I gave him birth vaginally which was very painful. I miss him so much and I cannot get over it. I am with my husband for 16 years in love and we are both carriers for the deadly disease. I don't know what to do. I am afraid to get pregnant because we have 1 in 4 chance, 25% to lost another baby.

 

[babyvaughan]

I just found out today that my babies kidneys were slightly enlaraged at my 20w6d scan they told me not to worry that it usually resolves on its own. After reading this I'm worried I'm so sorry for what you are going through.

 

[clauzozo]

Thank you. I hope nothing serious with your baby. I am sorry if I scared you. I didn't mean to. My 20 week US was perfect and 4 weeks later the told me my baby is going to die. I couldn't believe them, so I went to see other doctors and they said the same thing. We are both carriers but we didn't know until that point. Everybody is healthy in our family. This is a nightmare.
I wish you the best!!

 

[babyvaughan]

Oh don't feel bad! If I need support I know who understands.. I had my OB appt and she didn't seem concerned at all she didn't have a # as far dialated she said the note said mild dialation. I have an a scan on Tuesday at the high risk place that I already set up so she said for me to ask them then and they will let me know what the current status on it is. I'm very nervous! I try to forget about it everyday but it some how creeps back in my mind and I started researching which sometimes is calming other times scares me. For now til my appt I'm just going enjoy his movement and stay positive!

 

[clauzozo]

I understand your fear. I was in denial until the last minute. (actually still hard to believe that I was preganant with my angel 1 year ago and he is not with us... It is hard.
But try to stay positive and enjoy every moment with him. Until you don't have bad news please not to worry about anything. I hope everything will be okay at the high risk appointment. Please let me know if I can help you with anything else. Good luck!!!

 

[babyvaughan]

I forgot to update his recheck only one kidney dialated and it was a 4.2 it will be rechecked again in a month from now, possibly sooner if I have a scan between now and then. I've calmed down and the high risk doctor made me feel better I will feel more calm if its the same, better, or gone by 28wks but all I can do is wait it out.

 

[clauzozo]

Thanks for the update. I am glad to hear that. May I ask you how is your amniotic fluid? The normal AFI level is in between 15-24 cm at 28-40 weeks. (I am a nurse) I had 4cm at 27 weeks. He had multiple cysts in his liver and his lungs were not functioning. My little angel... I miss him so much... I am thinking about him every single day.
If his lungs are functioning and he has no other cyst in his organs, please do not worry. He is viable at 28 weeks especially if nothing's wrong with his lungs.
Not like my poor angel... at least he is not suffering anymore.
Please keep me update. Wishing you the best!

 

[babyvaughan]

Thank You! I dont know my amniotic fluid levels but I'm sure they are good or they would mention it, I'm 25 weeks so 3 weeks until the next recheck. The rest of of his body is totally fine, no mention of cyst anywhere just 4.3 mm of fluid in one of his kidney, the other one is normal. I was really stressing but I've managed to block it out for the time being, I'm nervous for the recheck but I have to stay strong for my little guy. I'm so sorry for all yours loses I can't even begin to imagine how hard it is!

 

[babyvaughan]

The paper she gave me for information it is, for the condition Pyelectasis.

 

[clauzozo]

Thank you. It is very hard, but at least he is not suffering anymore...

 

[clauzozo]

Please, do not worry too much. He doesn't have PKD which is good. I am sure you know that fetal pyelectasis is dilatation the renal pelvis in utero. In the majority of cases, it is physiological and resolves spontaneously. The vast majority of cases with mild pyelectasis in the second trimester resolve, either during pregnancy or in the early postpartum period. If not, most cases with pyelectasis resolve spontaneously in the first year of life and invasive procedures are not required. So, don't worry and enjoy your pregnancy. I am sure everything is going to be okay. Keep me updated.