Need a handhold - 20 week scan

[Bc87]

Hi

I had a 20 week scan and we were told one thing then another thing but in the end, we know one of our baby's kidneys is looking really bad. It's not renal nephrosis, not renal dilation which can fix itself. It's a huge echogenic kidney. I've had another 3 scans since in a short space of time - no change.

Doctors can't answer any questions but will keep monitoring until I give birth. The other kidney is looking okay now but I am so worried about it going down the same route.

We don't know what to expect, we don't know what's going on, it's all just about waiting now. I don't think I can get through these coming months, I am really really scared. All the good stories I found online were about dilated kidneys (renal pelvis) which is irrelevant to our scenario.

I am too weak to cope with this 😞

I'm so sorry @Bc87 . I've been through similar - devastating news in the third trimester ultrasound but left in the dark around what it meant - because the doctors didn't know themselves.

I know it's hard, but try not to google. The waiting is awful, but you can drive yourself mad by going down different rabbit holes on the internet.

sorry to hear this. Someone I know had similar and their boy is thriving after some initial infections, they had spoken about removing the kidney when he was two but he’s 18 months and been infection free for some time. I know it might not be exactly the same…

@GaspingGekko thank you and I'm sorry you've experienced this stress, too ❤️ I hope everything ended well for you.

@tangerinemagic thank you, it helps ❤️

You’re not too weak. You might not like what’s happening but nobody can change that or tell you it will be fine. You can only keep being monitored and everyone around you will also be hoping for the best for your baby and you need to speak to your loved ones/friends who will listen to your worries. Then know you’ll be there to love your baby whatever their needs will be.

I already have a happy healthy child and feel like I am absolutely failing her. I'm just in bed crying. Can't function and considering getting signed off work for a bit.

Haven't told many people about the pregnancy as I was waiting for the 20 week scan so now I don't even know how to tell them 😔

Thank you ❤️
I'm just hoping for one healthy, functioning kidney.

Things have worked out OK for us, not perfect, but OK. The first few months of DCs life were filled with stress, but we're several years down the line now. Still not easy, but better.

You'll find a balance between being there for your first child and needed to work through your emotions. Try to remember that worrying won't change anything. It will be what it is however much you worry. 💜

So sorry to hear this OP, I had lots of abnormalities at 20 week scan, had weekly scans and an op performed while pregnant. Was the worst time of my life. Be kind to yourself.

Thank you. Did everything turn out okay if you don't mind me asking? Lucky are the people who don't know this pain.. ❤️

Thank you. I'm so sorry you've had such a rough time and that things aren't perfect. Nothing matters more than the health of our children ❤️

I'm so sorry you're going through this. Is there a way you can articulate to your doctors that you'd like to understand better what impact this might have on your baby?

It's not the same, but I had a condition called ICP in late pregnancy than can cause sudden stillbirth (no reduction in movements, the baby just... dies) The constant anxiety and the sense of there being nothing about it I could control was very hard to cope with. So be very gentle with yourself. Take time off work if it might help - I didn't because I thought sitting at home fretting would be worse, but I sort of regret not resting more to be honest. The ICP made me really ill too!

Ive no medical training, but we get 2 kidneys. It seems logical to me that means your baby has a chance of being okay.

I think you should seriously consider telling people in real life. In a month, a healthy baby would be considered very very premature but potentially would survive if they were born. Would you want your baby to have a funeral if things didn't work out? Your friends and family would probably want to be able to support you at such a difficult time.

It's a tough one though. So many people I worked with couldn't understand why I wasn't excited about my baby being born. I couldn't be, because I was terrified it wouldn't work out.

Incidentally my nearly 3 year old is currently snoozing on me lap, and was born slightly early, but healthy. I hope you have the same happy outcome.

she is happy and the most beautiful thing in my life, however she is disabled, has a genetic condition, tube fed and non verbal. Just follow all dr’s advice and ask lots of questions. You will get through this OP ❤️

I also dont think you should feel guilty about the hiding in bed crying and ignoring your other child, either. That's important processing of emotions. Better to do that properly than to try to put a stopper in it!

You'll come out the other side of this emotional distress in your own time.

Op,

My mum had this when she was pregnant with me. She was also told I had a bladder issue and my brain was bigger than normal.

I am 34, and absolutely healthy.

I do have one kidney now - one failed when I was younger due to a faulty valve, but my kidney function is as good as someone with two.

I also have a daughter with her own unrelated kidney issues.

I know it’s easy to say don’t worry, but please be kind to yourself xx

Thank you. This would be the best outcome ❤️

One of my friends went through similar. Her son was born with one functioning kidney and she found out during scan. She was in a terrible state. Her son must be in his thirties now. He seems perfectly healthy and the only restriction I can remember growing up was they chose not to let him do body contact sports like rugby or karate.

Another friend had a child with one normal kidney but one very undersized kidney. They initially thought he might have to have it removed but it chugs along fairly normally. He's a teenager but doesn't seem to have had any issues.

OP 💐💐

I’m sorry you’re going through such a difficult time.

I can’t advise you about the kidney issues, but my eldest (DD) was diagnosed with serious heart issues at the 20 weeks scan.

The first year of her life was very hard, and she had two operations in that time, one of them involving open heart surgery.

But she came through it, and she’s now 17 and an absolutely brilliant young woman.

Wishing you and your little one, and your family, all the very best.

I feel for you. My second pregnancy I had a severe disability caused during the birth of my firstborn and at 8 weeks developed a condition that could have been fatal for both of us. I had scans every 2 weeks and at week 20 the baby stopped growing and had no fluid around them. It was a horrible thing both from the terror of what might happen and the chronic severe pain that left me bed bound, with the future of ending up in a wheelchair.

I feel so lucky that our daughter arrived safely, if extremely tiny and needing to be rushed to special care immediately. I was unable to be with her for the first week which was very challenging and I am in a wheelchair for life.

She's now a young adult and having a brilliant time at university. While both of us have medical issues from it, I would do it again in a heartbeat.

You might feel like you can't cope but you will. We have hidden depths when we need them, it just takes time and giving yourself grace to achieve it. Mum guilt is a big part too, we tend to feel bad about anything negative that affects our children. Not everything can be controlled, sometimes shit happens to the best of people and there's nothing anyone can do about it. Remember you are giving your unborn child the best chance you can and a sibling for your oldest, that's amazing. Try to focus on the positive things and make time in the day for you to do something nice for yourself. Even if it's something as simple as making a hot chocolate and reading a book, just something to look forward to.
You aren't superwoman and it's ok to be not okay. Lean on people who you trust and can confide in. Xx

@CuddlyPug @GertrudePerkinsPaperyThing @BeNavyCrab thank you so much, your messages mean a lot.

The part about the hidden depths made me shed a tear ❤️

Another night with hardly any sleep 😞

Hi there, sorry to hear about your situation.

There's a a charity called Antenatal Results and Choices which I thought I would mention to you.

Sending hugs

Hi OP, my first born had a dilated renal pelvis in both kidneys. I know you said it’s worse than that but I’m adding this for context because I must have read every journal article available on the internet about kidneys at the time.

The big thing that struck me from these articles is the fact that if only one kidney is affected, no matter how badly that kidney is affected, things will be OK.

We only need one kidney to live a normal life. Please try to not worry, I really understand it, but chances are things will be just fine.

@Kosenrufugirl thank you, I'll give them a call tomorrow.😭 ❤️

@Itsmyshadow I've been reading a lot about people with one kidney this morning and a lot of people lead normal lives. I just wish there was reassurance that the second kidney was going to stay healthy ❤️

Is there any testing available that could rule out any of the potential outcomes? The not knowing must be so difficult for you.

There is but they refused it initially as one of doctors made a comment saying it wasn't too bad (not the exact words). Then they went back on it so in my opinion, they should be requesting the testing again with more updated diagnosis now, and I think it would warrant it. I will probably need to push for it.