amnio recommended at 33 weeks; feeling scared

[Cuppachaplz]

Apologies for long and complicated history.
I am currently 33 weeks pregnant. I have an 11yo DS, and have had 15 miscarriages in between.
This has been a very complicated pregnancy for a number of reasons, so LO has been regularly scanned and monitored throughout.
I was offered an amnio at 18w due to 1/50 odds on DS bloods screening. I declined amnio at this time as neither DH and I were bothered by the possibility of a DS baby, and risk of yet another MC was too great.
An interhemispheric cyst (between lobes of brain) was found at 20 weeks scan, which was monitored closely. I met and discussed with the neurologist, and an in utero MRI was considered, but the cyst was not growing, so he planned to do an ultrasound through the fontanelle at birth, and monitor closely.
I was admitted at 31 weeks with sepsis, was very poorly, and they though delivery was very likely, although my temperature and blood count were too bad to consider steroids due to the risk to me. They managed to halt labour and I have been recovering slowly. A scan at this time showed the cyst had pretty much regressed.
I have been back this morning for a follow up. At todays scan, the cavum of the brain is very enlarged. I have been told that this could be due to toxoplasmosis or chronic viral infection, chromosome abnormalities (most associated with 13 and 18), or other causes.
They have recommended an amnio now for both of these possibilities (fluid for culture as well as PCR), bloods, and an in utero MRI.
Given that the risk is now pre-term labour, which i was already at risk of, and I will be 34 weeks by the time they do it, and that the abnormalities they are now concerned with are far more of an issue to the baby than DS, DH and I have agreed. I am no longer grossly septic, so have had the first steroid injection today.
The amnio will be next week, results 2 weeks, during which time I should have had the MRI.
feeling very scared, and exhausted after everything else.
Anyone any experience of similar?
TIA x

Hey. I was wondering how you were.
I don't have any experience I'm afraid, other than cvs, which is very similar to amnio and honestly was nowhere near as bad as I thought it was going to be, but I'm checking in for hand holding.
I hope that it's all straight forward for you and the results are positive. Xxx

Thanks saggy. I was hoping someone might reply.
When originally offered amnio, the DS bloods were 1/50, and we declined as, as I said to you before, a positive result would have changed nothing. This amnio is more urgent, more strongly recommended, and the risk of pre-term labour (apparently) carries less risk at this gestation to the life of my baby. Given the rest of my history, I don't think they were expecting me to go to term anyway. The reasons for this now are because the lesion which they have found is associated with more sinister chromosome abnormalities (13 and 18, amounts others), and therefore knowing at birth should any treatment be required (e.g. baby born in status). The other reason is to try to culture obscure viruses. My previous c-section scar is at risk of dehiscence, so aside form the risk to the baby, I think I would rather be aware of virus particles being spread through my abdomen, especially so soon of sepsis
I was wondering if anyone had any experience of such a late amnio; most people are asking me why bother now, but I feel that the reasons are valid, and the risk less...
Hoping all's well with you and your DD xxx

I'm sorry you have this stress. I guess at this point the amino is about preparing yourself and informing the medical staff so they can be well prepared to deal with any difficulties your baby might have immediately after birth. That has to be a good thing.

It's not quite the same, but we knew that my baby was struggling in utero due to placental problems. I had lots of extra scans. As a result they knew she was very small and could have other problems do they had a neonatal team in theatre for her delivery and an incubator ready for her. The tests, scans in my case, allowed the medical team to be prepared.

I'm so sorry to hear you've had such a stressful pregnancy.

I had a "late" amnio at 32 weeks with my third child. We wouldn't terminate for T21, but basically just wanted to know as I had a 1 in 34 chance. Didn't want it hanging over us on the day he was born, peering at him and wondering etc etc. You have a far greater justification than us.

It was really quite fine. It was not particularly painful and it was over very quickly.

It is absolutely true about the statistics - there is under a 1% chance of preterm labour and pretty much no chance of loss whatsoever. There is a vanishingly tiny chance of infection but it sounds like you're being monitored pretty well anyway. At 33 weeks a baby with no issues would spend very little time in SCBU, it's a good gestation to reach.

Good luck with everything and I hope you get good news.

Thanks all.
My consultant was not expecting me to get to term anyway, and following a severe blood infection last week, was waiting for me to be well enough to tolerate steroids. Will be approaching 34 weeks by the time of the amnio, so even better. I've had a long chat with the foetal medicine MW today, and have a SCBU tour arranged. Starting to get my head around things, and feeling more positive. Thanks again xx

Special care is amazing. so many dedicated people!
Fwiw I think you're right to have the amnio. You know where you are then. And you have time to prepare yourself for any treatment the baby needs.
I'm so glad that I knew ahead of time about Lucy's problems. It gave us time to get our heads at least a little straight. I couldn't imagine having to deal with things for the first time when I was tired and hormonal after birth.

I maybe too late but just put your mind at ease I had an amino at 35 weeks after a lot of thought as to whether we would benefit from it. We decided that if it was T21 we wouldn't have terminated and a lot of other issues had been deemed low risk withscans and that left us with a issue that was no life threatening but needed treatment at birth. Hope this helps and I 100% feel it was the right choice for us

Thanks lois
amnio is in 45 mins!
There seem to be so many reasons why it is necessary now in order to prepare for and treat LO; feeling very scared and emotional.
DH being utterly useless :/

Hope it went smoothly mine was fine painless no complications but I was on and off the table as didn't know whether to go ahead or not. I think it was fear of the test its self pre term labour and the results I guess.

Hope it went well and you get your results soon. As we were only "concerned" with T21 (as that was what I had screened positive for) we got the FISH results in about 30 hours. But it may take longer if they're looking for additional things for you.

Thanks again.
They said it would be 3 days for 13, 18 and 21 (DS, Edwards and Pataus), unless the PCR fails in which case these will be with full results. Full chromosome results 2w, and virus culture variable. I think they keep trying for at least 3w. Apparently failure of cell line culture and therefore no results is much more common at this gestation, but I assume by now, any failure will just mean blood testing baby at birth given that I am 34w tomorrow.
Other tests to be confirmed within the next week (apparently, but heard nothing yet).
Agonising wait, and they are unsure how long LO will stay put...

Baby has Down's
Thankfully negative for T13 and T18.
This is an 'incidental' finding as brain lesion is not associated with or explained by T21, so still waiting on expanded results/virology/MRI etc.

Absolutely - thank goodness it was not T13 or T18! So now you're facing multiple issues which are all very unusual in the first place - in my experience consultants love statistical anomalies so hopefully you have their full attention now if you didn't before!

I am keeping everything crossed for you over the further test results. I hope you can get some answers on the other issues which sound really quite scary, although I freely admit I know precisely zero about issues with the brain so for all I know these issues could be fine. Really hope that is the case!