(ADVICE PLEASE) 16 weeks pregnant potential cysts on baby’s Kidneys

[Miraclex2]

Initial CVS results came back normal, the rest of the results should be available by next week.

At this point there is low amniotic fluid and after having a scan today they think the baby might have cysts on both Kidneys but can’t be sure because not mature enough yet.

They advised of termination or to wait until 20 weeks to do a more in depth Anatomy scan which I have agreed to and will be monitored each week until then.

Has anyone been in a similar situation and things turned out ok? I’m worried about these potential cysts and what this could lead to.

I am so, so sorry, how worrying for you - Handhold here from me to you.
Will you be having these scans and reviews under fetal medicine at all?
its going to be so tough for you having to wait for each scan, pregnancy is such a hard journey for some
Up until now, how has your pregnancy been for you?
I really am wishing you and your lovely baby all
the best OP, and I’ll be keeping an eye on this thread to see how you’re getting on.

Hello, initially baby had increased NT of 5.2mm, I was booked in for Amnio last week but due to the lack of fluid they had to do CVS.

I haven't done anything under fetal medicine yet, they mentioned sending me to a specialist if baby doesn't improve.

I have no idea what to expect, I have also seen this may resolve on its own?

I have been so scared, I am expecting the worst again.

Its totally understandable that you would be so scared, I really, really feel for you :(

I have been under fetal medicine with my first and subsequent pregnancies (because of a different issue to you and your baby’s). I’m quite surprised that they haven’t referred you in yet (Although, I have no other experience other than personal).

I don’t think it’s fair on you and your baby to keep you waiting, it sounds as though you need more support - I think Fetal medicine could offer you this.
Where about are you based? Do you feel that you could request to be seen by them?

I am crossing all fingers for you that things improve, even if I am just a stranger on the internet.
Do you have lots of support around you? (In terms of partner/family/friends, etc).

Thank you for your support its much appreciated!

Yes, fortunately, I do have a lot of support its just a horrible experience! I dont know anyone that's gone through this!

I am back at hospital next Monday for another scan, I have also got in touch with The Scottish Paediatric Renal and Urology Network myself "awaiting response" the waiting has been horrendous!!! hoping to see a specialist earlier than 20 weeks.

I definitely need more advice and information about this, we have been left in limbo each week awaiting another scan.

Based in Glasgow x

Just to add first CVS results came back normal!!!

Oh gosh, it’s awful having to wait in these circumstances. I’m almost wishing away these next few days for you so you can have your scan - the repeated CVS results should be available for you then too I hope. 🤞

Well done to you for being proactive - getting in touch with SPRUN sounds good. I hope they get back to you quickly.

When I was under Fetal med, they had arranged some genetic testing - my issues were random and it didn't reoccur with subsequent pregnancies. Is there any genetic link to renal issues in your family?

I’m sorry again that you’re going through this, it’s absolutely terrifying when it’s concerning your child.
I’m hoping someone else posts on this thread soon that can be helpful.
Do you know if your baby is a little girl or a little boy?

Unfortunately OP, I have only very recently been in the same position as you, so believe me when I say I know exactly how you feel. At my anomaly scan they found cysts in my baby’s kidneys too and we were referred to fetal med within a couple of weeks, all they did was keep an eye on them during the pregnancy but didn’t give me any reassurance. I did not enjoy the pregnancy, dreaded every scan and cried all the way home every week for 20 weeks. The consultant wanted to do genetic testing at 28 weeks but I didn’t because I didn’t want to risk preterm labour and all other tests were fine, baby’s kidneys were producing urine as there was normal amounts of fluid.
I went on to give birth and he was taken straight to Neo so his blood pressure could be monitored (tiny cuffs used!) and daily blood tests for LFTs, they did the genetic testing then. He has confirmed ADPKD which was the best outcome we could have hoped for.
I only hope you will have similar, it is such a stressful time and so so hard to not think about, it’s almost like a grief that hasn’t happened yet. But you will get the support. The medics are knowledgeable, but just be prepared for difficult information to hear and make sure you have someone with you, I was too upset during any appointments to absorb anything being said and I couldn’t ask questions either because my mind went into meltdown but my husband and I had a list of things to ask and he did the talking. I know this is going to be a hard hard pregnancy and I don’t want to sugarcoat and be insincere but I so so hope for you that you get the answers you need. I should say that I actually ended up being the carrier of the gene so I got diagnosed myself with kidney disease and thst was another plot twist that I hadn’t foreseen. I know my reply is jumbled and probably all over the place, but this has only just happened to me in the last couple of weeks. I am sending you so much love and luck and I hope you have a positive outcome xx

@myselfandHow terrifying for you- you must feel so relieved to have him in your arms. It’s a constant worry isn’t it. I hope he (and you) are doing okay.
@Miraclex2just thought I’d post to check in, thinking of you and your little one.

Fetal medicine confirmed both Kidneys were covered in cysts which means they aren’t functioning also no bladder visible, the low amniotic fluid causing lungs not to develop properly as well. I had to end my pregnancy delivered a beautiful baby boy 18wks 4 days weighing 200 grams🥹💔 far too precious for this world such a heartbreaking time🕊️🤍

Oh @Miraclex2, I really am so sorry.
please PM if you want someone to speak to, I’ve been in a very similar situation to you.
Nothing worse than losing a child.
Sending so much love to you and your beautiful baby boy.

So very very sorry OP 💔

I’m so sorry @Miraclex2. I’m sending you a very big virtual hug. X