Cysts on baby’s brain - Support needed

[Sherbet27]

I had my 20 week scan.
They found 2 cysts on the baby’s brain and too much fluid on the left side, where the bigger cyst is.

I have to go back for a repeat scan in 3 weeks time to see if the fluid has reduced. If it hasn’t, it doesn’t look good. My baby could either have Down syndrome or a condition such as learning difficulties, brain damage, speech etc. We were offered the amniotic sac test yesterday but declined until we find out whether the fluid reduces.

Looking for anybody who has experienced this before who can help me talk through this. I am shocked and completely heart broken and have children at home to think about too.

I don’t have any advice but didn’t want to read and run, hoping everything goes well for you 💕

Could you have the harmony test?

I don’t have any experience of this so have no advice to offer, but I do have a toddler who has Down syndrome if you have any questions I’d be happy to answer. Good luck for the rest of your pregnancy x

LAherbert27 hello, so sorry you are going through this. I've just been through something similar which was traumatic and stressful, the waiting and not knowing is the absolute hardest :(

Have you got any other indication of something wrong or are the cysts the only thing? From my research several weeks ago when my baby had a posterior fossa cyst, there were many other things showing up. I remember reading cysts (plural) can be harmless and can decrease by 3rd tri. If it's just those in isolation you may find it's nothing. If there are other abnormalities then it would be best to have AMNIO for clarity.

It's so hard, I honestly get it. I terminated at 16 weeks after 2-3 weeks of pure stress. I had cvs as I was earlier but I've had AMNIO in my first pregnancy and it's fine and quick. Sending big hugs xxxx

Not quite the same, but my baby and a few others I know had cysts when they were born (very prematurely) and most have resolved without complications

Also the brain is a complicated thing. My daughter had a very large bleed to the brain which left a lot of damage and no one knew what the outcome would be. She is now 10, has autism, recently diagnosed with epilepsy but attends a mainstream school as normal and lives a normal life. Her outlook was bleak for us in the first year and the doctors are surprised when they see her after seeing her notes.

I know others with the same bleed who need a lot of support. It’s complicated and no one has any way of knowing what will happen - which is shit I know - but please have hope that this might even have no impact.

Sending love 💕

I completely understand what your going through, my baby is due on Tuesday and he has a cyst in his brain on the left frontal lope. I actually made a thread on MN about my experience if you want to read it here.

www.mumsnet.com/Talk/antenatal_tests_choices/3790880-Agenesis-of-the-corpus-callosum-Cyst-on-babys-brain-24-weeks-pregnant

My advice,

• Gather as much info you can, you said you declined the amniocentesis (sac test) of course that's your choice and I respect your reasons.
  But as I wrote in my thread that test made a huge difference in my decision to continue my pregnancy as I feared the same as you that my baby had a disorder like downs or Danny Walker syndrome.

• Just because baby has a cyst doesn't necessarily mean they have a syndrome.

• If baby is healthy physically, heart, spine, vital organs then that's a good sign.

• Cysts in the brain aren't common but they are not that rare either. So doctors have lots of options for treatment once baby is born. Such as a shunt (which drains the cyst) my baby might need one but we have to wait and see.

• If they have not offered an MRI bring it up in your next meeting. Getting all the information medically possible was vital for me and my husband

Reading your post took my back to how me and hubby felt just 6 months ago. I imagine you feel sick with worry and fear but try to look for and focus on positives. It is possible that the fluid will reduce or at the very least not get any bigger ( like in my case).

My baby will in all likelihood have developmental delay due to his cyst and you know what? That's ok, baby doesn't have to be perfect, baby will just need a little extra care and support and there is lots of support out there.

Stay strong 👍 and please keep us updated in what's happenin

Just to add, my child who has Down syndrome has no medical conditions/complications. Developmentally he is a little behind other children his age (later sitting, crawling, standing etc) but any child could have delays in their development x

Everything else was fine - just the large cyst (back left from what I remember), smaller cyst (at the front) and extra fluid around the left cyst.

Consultant mentioned the fluid may be from the cyst as it’s quite a big one and very very clear on the ultra sound scan.

We have our scan next in 2 weeks 5 days with the same consultant to see whether the fluid and cysts have reduced.

@Lauracrazygirl - I have posted on your post reading this has helped me be more positive thank you x

Sorry to hear that OP.

I had a similar scan at 20 weeks when pregnant with DS. Also 2 cysts, both on the left side, and no other markers. Turned down the amnio too and opted for the harmony test for peace of mind but was expensive.

Cried for weeks and researched what I could but not a lot of info out there. Harmony came back as low probability and the cysts had resolved by the next scan, I think it was 6-8 weeks after the 20 week one. DS has no syndromes or anything.

Wishing you all the best x

Great to here some positive stories it helps during my anxious time of waiting, 2 weeks 4 days and counting in hope it’s all reduced