Not coping with prenatal testing

[Kellyc212]

Hello all,

In November I found out was expecting baby #2. Our DD was only 5 months so it was a massive shock. And first I briefly contemplated a termination as I was so scared of having two bubbas close together. However, once we got used to the idea we decided to proceed.

At the 12 week scan the nuchal fluid was 6mm. We decided to have a CVS. Results from this came yesterday and have indicated a possible minor sex chromosome issue. We were advised to have an amniocentesis as it's quite possible the chromosome issue is confined to the placenta (confined placental mosaicism). The amino will confirm whether the issue is with the baby or not. The amino was today and we now have another 3 week wait for results (CVS results also took three weeks).

If the amino results are clear we then need to have an in-depth scan in early march to check for physical abnormalities which could potentially still be lethal.

The stress of all this is becoming too much. I feel like I'm not able to enjoy time with my DD and I'm definitely not enjoying my pregnancy.

I feel awful for saying it but after hearing today that we have yet more waiting and worrying to get through I'm starting to wish we had terminated in the first place. It took a lot of time for me to adjust to the news of the pregnancy and just as I was starting to get excited things went wrong. I now feel I cannot plan for this baby or get excited.

Whenever I think of the baby I feel depressed and even slightly resentful as this worrying is affecting my relationship with DD. I'm panicking that if everything is ok il still not bond with this baby as this pregnancy has been nothing but worry.

I feel like the worst person in the world saying this. I'm hoping others who have gone through difficult pregnancies can help me out. Will it all be ok when baby comes along? I have a history of anxiety and I'm so worried that I'm going to develop pre-natal or post-natal depression which will not only impact this baby but also my DD.

Any advice would be appreciated.

Xxx

First of all, I'm really very sorry that you're going through this.

I don't have the same circumstances as you but I am in the stage of just wishing I'd terminated and I feel so awful for thinking that.
I've had 2 a&e visits due to a possible ectopic, but been left to my own devices after not receiving appropriate care both times.
Also i was admitted with severe hyperemesis (vomiting 30 times a day), the medication is barely working, I have an actual scan tomorrow after 5 weeks of badgering all sorts of people to see if anything is wrong with the pregnancy. Still getting horrendous pain.
I've barely spent any time with my 2 year old since being really ill and I hate that so much. We're carless atm and I can't go out because I'm so ill so she's suffering. I'm trying my best but frankly I just wish I'd never got bloody pregnant. However I'm sure that it'll pass in time.
I had antenatal and postnatal depression with my 2 year old and I love her to pieces.
I'm sure you and me both will come through the other side all rosey if not knackered. Sorry I don't have advice, I just thought it may help to know you're not the only that feels that way.
Best wishes to you, I really hope everything turns out alright x

Op sounds like you're having a shit time of it! I think you've just got to take it one step at a time. Thats probably really rubbish advice but you've had the test so there's not much you can do for the next 3 weeks unless you decide to terminate, but then will you regret that if you find out your baby would have possibly been ok. I can't really offer much help or advice as I've not been in this position, so I'm just offering a hand hold and an unmumsnetty hug.

It sounds v.stressful and complicated. We had a scary time with a raised NT and bad odds for chromosome abnormalities. Thankfully, we had an NIPT and found out its ok. I found the worry was eased by baths and walking. Basically anything that changed my temperature and focus. I don't kmow of you have similar activities you enjoy but it might help even for a short time. Good luck with the results and stay strong.

Thank you all for the kind words and for not judging. user1485706893 it's so reassuring to hear I'm not the only one thinking difficult things- I thought I was maybe going a bit mad but I guess it's more normal than I thought. Why does pregnancy comes along with crazy hormonal moods!? It just doesn't seem fair.

I think I need to try and get out more! The grotty weather is probably only feeding into my bad mood. Maybe I should run off to the canaries for a week 😎

Xxx

I'm in the same situation Kelly. I had a CVS, initial results were ok but was advised of a rare trisomy in some of the cells. I'm currently waiting to have an amnio next week to find out whether the trisomy is in the baby's cells or, like you, it's confined placental mosaicism. The waiting is so difficult xx

I'm sorry to hear you're going through the same BlytheOfWindyWillows. When did you have your CVS? Did they advise which cells are affected in your case? From my reading I think that 80% of the time mosaicism is confined to the placenta only. Though at this point stats don't reassure me as I keep getting the bad odds! 😔 X

Oh sweetie i had a tfmr after an awful 12 week scan. It through me into deep depression, i was childless and desperately wanted a baby. We didn't wait for a cvs or amnio here as we were told there was a 0% chance of survival but the postmortem showed no chromosomal abnormalties, it must have been a physical abnormality. 2 months later i was pregnant again, the first 8 weeks til the 12w scan were horrific, at the 12 week scan we got a high nuchal result again. We had to wait another 4 weeks for an amnio then another week for results (clear thankfully) then another 4 weeks for the abnormality scan (again clear thankfully). In our case it turned out well and dd is now 6 months old but i sufferee crippling antenatal depression just 'waiting' for another baby to die. I dont know what will happen for you but your not alone and please chat here to vent or for advice if it helps - i found ARC super helpful

Had the CVS nearly 3 weeks ago and due to have the amnio next week kelly but like you i'm struggling a bit to stay positive xx

Did you get your CVS results now? I have another 2 weeks ish for amnio results yet....

I've had the full CVS results, had the amnio on Wednesday and have been advised the results take up to two weeks so the waiting continues. Hope you are doing ok xx

They told me 3 weeks for my amnio results. But I had mine done the Wednesday before last- so we should both get results around the same time. Fingers crossed for both of us.

I'm relatively relaxed as at the 16 week scan our little boy was looking good and they could see most things like stomach, kidneys, bowel etc so there is nothing major "missing" or anything.....the 20 week will look at organs in depth though- just 3 weeks to go for that!

How are you feeling? Was little one looking good at your amnio? X

That's good news. We were the same, the scan was really positive. Fingers crossed for us both xx

We got our results back- baby does have the chromosome problem Identified by the CVS. The chromosome issue itself isn't bad but can be associated with heart problems. It's rare to have the associated heart issue but given baby has too much fluid (NT) on his neck could be a real possibility (apparently the chromosome issue wouldn't cause the high NT). All of this has just added to my worry really. We just seem to be getting to "bad odds" :-(

Kelly, i'm sorry to hear that. How are you doing? We got our amnio results yesterday. I have confined placental mosaicism so will be getting growth scans every 3-4 weeks to ensure it doesn't effect the baby x

We had our 20 week scan on Tuesday and found we had two soft markers for Down's syndrome. After seeing a fetal heart specialist on Thursday, then fetal medicine specialist on Friday, we decided to have an amnio - our results come through a lot quicker than times mentioned above, we should find out tomorrow, on Monday.

Some points I hope will help reassure or at least make anyone else in similar positions feel like they are not alone:

• The amino test in itself was not the massive ordeal I built it up in my head to be. I think because such a precious thing hangs in the balance over the results, I felt like it should be painful and torturous - but in reality it was painless and over in 30 seconds. It took longer to set up the equipment than it did to carry out the procedure.

• Our fetal medicine consultant informed us that as far as the hospital records show, a healthy baby has never miscarried due to the amino test. All their recorded miscarriages were of babies that tested positive for chromosomal issues. This was definitely a comfort to us, as we feel strongly about not continuing a pregnancy if we found the baby to have Downs Syndrome. If your looking at continuing the pregnancy whatever the results, this may not be as big a comfort. I do not see any reason for the doctor to fabricate this information and took her at her word. Of course, there can be a first time for everything too. Hospital was Leeds General Infirmary.

• The care we have received from our local hospital and LGI this week on the NHS has been second to none. Every consultant and member of staff have been fantastic and very understanding of our feelings and I have felt very informed the whole time.

• The waiting is truley the most unbearable part so far. As I said before, I only have to wait 3 days and it is tearing me up inside, I cannot imagine waiting weeks. I go through periods of intense optimism and then sink to a feeling of dread, like I already know it's bad news. Awful, selfish thoughts pop into my head that I do not want to own and definitely don't feel I can voice to my husband without sounding like the most selfish person in the world. For example. If it is the worse news, perhaps we can use the money we saved for my maternity to take a trip we have been wanting to do for years and years. Totally inappropriate, but it's there, with a lot of other awful thoughts. I have. It stopped rooting for my little girl, but my brain is preparing itself for worse case scenario.

• Being 24 hours away from potentially the worst week in my life is exhausting. It also sucks the joy out of feeling my baby wriggle inside me, oblivious to what's going on outside. I felt her move from the outside with my hand on my tummy for the first time last night, I couldn't bring myself to show my husband with his hand because I am trying to protect him if it is bad news.

It's just all consuming and I have neve hoped/wished/prayed (I am not even religious) so hard in my life that everything will come back okay.

I guess my point for the OP is that you aren't alone, there are many other people waiting on similar news and you have to try (as I am also trying) to remember that most of these test results come back with good news and if the worst happens we'll get through it one way or another. X

BlytheOfWindyWillows I am so pleased to hear that you are likely to have cells only confined to the placenta. I also think its great that they are still monitoring you monthly.

beeblossombee I am sorry to hear what you are also going through. I hope you get the results you want. Did they give you any indication of what issues the soft markers may cause in their own right? Be prepared that you are likely to still need ongoing tests/ scans throughout the pregnancy even if baby is cleared for a chromosome problem. I think this is what I have found most difficult- first I had a three day wait for initial CVS, then another 10 days for full karyotype, then another 3 weeks to see if I had confined placental mosaicism....and now the wait for the echo and abnormality scan. I have become almost "used" to it now and in the last few weeks am managing better.

For me it is unclear how severe the effects of the babies chromosome problem may be. We aren't going to know the full effects even at birth- as our boy grows issues may become apparent or he may be just fine depending on the severity of his chromosome abnormality. He will need check ups as he grows. It's very scary but I have tried to think that in some ways this is the same for all parents- you don't know at birth what your child's future holds. The fact our boy will be monitored means hopefully any problems he has can be addressed early.

That said we still have to get through our abnormality scan next week just to ensure baby doesn't have major physical problems. I have allowed myself to begin to bond with my boy and have started buying him outfits as I was starting to feel detached from my pregnancy which only added to my upset. Maybe this is the wrong thing to do as next week could bring bad news but I am trying to think positive and am now feeling more able to enjoy my pregnancy.

I hope everyone else who has posted here is able to try and find a positive mindset also. x

Sorry to hear others going through tough times. Jumping on here as in similar position awaiting test results (details in another thread). Had Harmony test last Friday after bad screening results (high nuchal at 3.9 plus age prob a big factor - 38), I'm 15 weeks on Wed. This wait is excruciating! I'll try the tips above. Anyone got any other advice on tactics to get through this horrid time?!