Amniocentesis at 24 weeks, please advise

[JungleRun21]

We have recently found out that there are abnormalities with babys heart on our 20 week scan.
We have been seen by fetal medicine and had a cardiology referral off the back of this.
The cardiologist has said there is no treatment for the heart issue but would suggest genetic testing to rule in or out any other abnormalities.
The remainder of our 20 week scan was normal, as was the fetal medicine scan. Out 12 week bloods were low risk and we had a private NIPT at 10 weeks which was also low risk.

Fetal medicine has booked me for another appointment to discuss issues and have said they have pencilled in an amnio as well.
Ill be 24 weeks at this visit.
Im terrified at the prospect of an amnio. Has anyone had one this late?
What happened?
Was it ok?
Did you have any effects or issues afterwards?

A long time ago now but was scheduled around 20 weeks. It was a room with the gurney bed and scan machine. The doctor did one of the procedures per week. Someone said to me it would be nowhere as bad as I feared and they were right. It was painless. I didn’t move a muscle and I didn’t look at the needle or watch. I bed rested the next day. Good luck.

OP, do you feel properly informed about what the chance of genetic difference is, with your baby’s particular heart difference? And about what your options are? Amniocentesis can be very useful but it’s completely your choice whether you go ahead with it. In general, if you’re committed to continuing the pregnancy, and a genetic result wouldn’t make a difference to you, then it’s worth carefully considering just not doing the amnio. It has a small but real chance of causing early birth, and depending on the exact heart difference that could be really dangerous for your baby. Some people want the information before birth but wouldn’t use that information in making a decision to stop the pregnancy, and sometimes then it’s worth waiting until later in the pregnancy >30-32 weeks, to minimise any risks. Other people would definitely want that information as a genetic diagnosis would make a big difference in decisions whether to continue on, or what sort of care they want for baby after birth. all of this is really dependent on what exactly has been seen for your baby and how you feel about it, so hopefully your team are helping to explain and work through any questions.

all of that said - amnio risks are small, procedure is pretty quick (a couple of minutes with the needle in), most people don’t feel too much at all, and only a very low risk of complication.

Thank you for replying.

If im honest, no, i dont feel properly informed.
I am aware there is an issue with the return blood flow to the heart, an interrupted inferior vena cava. This can be linked to genetic factors but nobody has said exactly what.
I understand the other issues which could be present, but as yet, nothing else abnormal has been found in the body.
The cardiologist has suggested an amnio hence being referred back tonfetal medicine.
But I just dont know what, other than structural issues there could be. There is very little evidence online as its rare.
If i was to be told there was a chance baby could be hugely impacted and would have a reduced lifespan then i would consider TFMR. If we are told structure is normal and nothing else is an issue, I wouldnt have the amnio.

Im so conflicted at the moment.

I had an amnio at 21 weeks. It was quick and painless to be totally honest. Felt a lot of pressure for less than 5 seconds. The whole thing was over in less than a minute. They scan you before to see where baby is and if you have enough fluid. They scan you after to make sure they are moving around. I felt a bit stiff afterwards but not sore. I drove 1.5 hrs home after it and just went to bed to relax but i had no ill effects. I had it done on the Friday afternoon and got results on Tuesday afternoon. Good luck x

Just to add to this post, Im also on Aspirin due to the risk of pre-eclampsia.
Is this still ok to take if I need an amnio?
Nobody has told me about this.

Yes you can continue with the asprin. I was on it from 12 weeks when i had my amnio

Thank you, thats reassuring 😊

I had an amnio at 21 weeks. It was quick and painless but uncomfortable. They scanned before and afterwards and kept me in for a while for observations - although it was covid and I was on my own so think this impacted how long they wanted keep an eye on me (as I was driving home on my own). I did feel achy and just crappy for a few days after but that could have been the stress.

It took 2.5 weeks (we were told 2-3 weeks) for us to get out results back - they have to grow cells in a lab to compare for abnormalities etc. Our amnio came back as clear so didn't help our situation/decision. Its worth considering what the amnio will give you on top of the other scans and tests you have had - could it rule in or out some conditions? Could it change the decision of if to continue with the pregnancy?

I did find it they wouldn't commit to anything diagnosis wise until after the amnio results and a few other tests (MRI and more scans etc). They were always very vague until the appointment about the amnio results. Even through the amnio didn't really change our outcome (other tests did) if it had show something other tests didn't, it would have helped.

It’s okay not to know yet and to feel conflicted, it can take a while for your thoughts to become clear.
I think you’ll find that the MFM appointment should be helpful for going through everything again. Most often interrupted IVC isn’t associated with genetic conditions and can have a pretty good overall outcome but of course depends on detail that only you and your doctors can cover properly.
would suggest give yourself some space and time, write down any questions you have so you can take them along with you, and I think a bit of time and more discussion with your team will bring you some clarity. Good luck :)

Im just a bit confused at the moment and have conflicting messages from fetal medicine and cardiology. I need to have a proper discussion with someone from fetal medicine as i think theyre the only ones who can help me.
I really dont want to have an amnio because of the risks. Things have already been difficult and i can really do without any further complications.
But the not knowing is tough. Although I may not even get anything out of an amnio anyway.