Support for Women who are TTC or Pregnant Following a Termination for Abnormalities- Thread 8

[Alittlexmasmagic]

Welcome to the newest thread of support for those ladies who are pregnant or trying to conceive after terminating for abnormalities (tmfr). Since this thread first began (almost ten years ago!) there have been stories of heart break, sadness and fear, but from these stories there have also been stories of happiness, success and most importantly, hope.

@Brooklily I really hope today goes well for you. I was saying to my husband, I was waiting to get the day of the 12 week scan for what felt like ages and then once it was here I almost wanted more time! It’s so hard.

@Seahawk80 I hope your scans go well for you and you can the go and enjoy your break with your family.

@BabyPotato welcome back, I hope your house move went/goes ok. All the best with ttc.

If all our test results come back ok, I am just torn when to tell people, I feel like it would be safer to wait until the 20 week scan (all being ok and not getting in front of myself) but then I don’t know if I will be able to hide it. I just want to avoid any excitement without being ungrateful, as I am just not ready to believe everything will be ok. Only close family knew about our tfmr so I know they will get it, it’s just outside that. I am rambling a bit, but it’s such a hard one to navigate and I have no idea how to handle it yet.

@URMysunshine4 I felt the same. To be honest it's got pretty hard to hide for me, I am very obviously pregnant, I guess 1 full term pregnancy plus 3 losses means your body is a bit knackered and shows more! However if I wear something like high waisted leggings and a baggy shirt you can't tell so I'd been doing that for work on the odd day I had to go in and have only told a few more people like mums I see for play dates etc. It's totally up to you and even if people suspect you are pregnant most people are polite enough not to come out and ask you! I've also glossed over things a bit but to people I have told I've said we've had a hard time - mainly to explain the fact that I'm cautious and come across as not very excited.

@URMysunshine4 It's tricky, isn't it? When I was pregnant after our loss I was terrified of telling anyone in case anything went wrong. I was also annoyed if people got excited for me because I just could not let myself get excited in case it was taken away from me again. It really is rubbish that we're not likely to experience a "normal" uneventful pregnancy with all the happy times. I did get a lot more confident in the third trimester (or thereabouts) so luckily the anxiety did decrease a bit as the pregnancy progressed. I hope your tests come back ok and you can chill a bit. I guess you will have to tell people eventually but you could always mutter something about still being cautious.

Haha. I remember when I finally told work years ago and I had managed to keep it a secret for a long time. Everyone was very excited for me and someone assumed I was telling because I had just had my 12-week scan. They said "ooh, so you must be around 12 or 13 weeks now?" and I was actually something like 28 weeks. I had just kept my head down and worn loose tops and flowy cardigans and generally sat down with my belly under the desk.

Hi everyone, I haven't posted for a while either due to a house move and renovations, good luck everyone waiting for test results/scans.

I also have my dating scan at the end of the month when I will be just over 13 weeks. Already had 2 scans and things seem okay so far and baby measures exact. My daughter was always measuring behind even as early as 7 weeks and when she was born at 22+5 she was more than 2 weeks behind. This was due to her condition. I feel a slight relief knowing this but I know I have a long way to go still.

I'm also holding off telling people for as long as possible, however, my boss has just let us know we will be having a gradual return to the office in September. I don't feel safe being in the office due to there being no windows or ventilation, I can't social distance either so I know I need to tell him before then. Do I have any legal rights to stay working from home does anyone know?

@No1worrier I'm not sure about legal rights but they do have to risk asses for pregnant women and there is a lot in the media about pregnant women being vulnerable, it's a totally reasonable request. My work have said everyone back FT in the office from September and 3 days in August but agreed to me WFH until I'm double vax plus 14 days. I didn't ask for more than that as I prefer going in and on the days when my mum / MIL have DS after school it's a pain to WFH. I did ask if we could review it nearer the time in case cases go up a lot.

@URMysunshine4 good luck for your NIPT. Mine came back within 3-5 days.
@Brooklily good luck for your 12 weeks scan. I felt and still feel exactly the same as you whenever I go for any scan. Sadly all the excitement of pregnancy is sucked away. You will start feeling more confident as the pregnancy progresses.
@Seahawk80 good luck for both your scans. Having a holiday after it sounds like a great idea!
@BabyPotato welcome back! TTC after tfmr is quite stressful! Good luck !

@No1worrier measuring ahead is always good! Our tfmr baby measured behind from the very beginning. I think it is a reasonable request especially if you have not had your vaccination yet. I have had both my vaccination now but since I don’t have that much time left anyway, my work let me WFH. They have to legally do a risk assessment anyway.

@No1worrier also forgot to say measurements are important. With my baby with Edwards I went for an early scan at 7 weeks due to spotting and there was no heartbeat, I was very sure of my dates and I was 2 weeks behind by 12 weeks. The baby that I miscarried was also measuring a week behind at 8 weeks.

Thanks everyone, I hope I am worrying for nothing (hence the username) and my boss just allows me to continue working from home without any fuss. If I felt safer in my office I wouldn't mind but it's literally germ heaven. 20 of us in one room, no windows and very close to one another. Before covid if someone had the cold the full office would have it within the week. He has also said that you don't need to wear masks when walking around which I don't feel comfortable with.

I will be telling him after my scan at the end of the month so will know more then. I have suffered terrible anxiety since my loss in March and rarely leave the house or see anyone, so I'm hoping he can say to my other colleagues this is why I am staying at home a bit longer until I feel okay to let the rest of the work know.

Should add I am in Scotland so masks are still mandatory in public places but for some reason my boss doesn't think this applies to our office!

Thank you everyone for your kind words and support ❤
The baby is measuring 12+4 when my dates suggest 12+1. She recorded it as 12+3 at my request though or the due date would have been the date of our TFMR. Baby looked completely healthy where as at our last 12 weeks scan all the structural abnormalities were detected which led to our TFMR. They weren't able to get the NT measurement but they have never been able to get it for my babies so that doesn't worry me. I'll have the quad test for Downs at 15 weeks and then scans at 16 and 20 weeks. Our sonographer is also a midwife who was involved in our TFMR pregnancy and was really positive and reassuring that everything looks good for this stage.
I'm starting a new job in three weeks and I went in and told my new manager after the scan, something I've been very worried about. She was so lovely and actually cried out of happiness for me.
We have told more people today too. I know everyone is different but for us we want to enjoy this and be excited.
Feeling very happy today ☺

@Brooklily Aaahh that's brilliant! I'm so pleased for you.

@Brooklily that’s great news!

Great news @Brooklily

Had our 20 week scan on Friday and all was fine. I still feel nervous, think I always will but definitely much better.

Hi everyone

I'm currently 18 weeks with what will hopefully be my rainbow baby after two losses. I had a miscarriage in 2019 and a tfmr in July 2020 at 26 weeks for my beautiful son Ethan who had vacter association and hetrotaxy syndrome causing multiple severe abnormalities. I also have a living son Who is about to turn 4. He was born with congenital neuro abnormalities ventriculomegaly and an absent cavum septum pellucidium. All my babies have been the result of IVF with icsi, and I have never had a normal healthy pregnancy.

My current baby is from a frozen IVF cycle and I had the astra zeneca 1st dose vaccine one month before having the IVF cycle, I haven't had the second dose because they have stopped giving it to under 40s and due to the blood clot risks. I'm also scared that the vaccine may have done something to the development of my baby. I have been coping fairly well until recently, my 12 week scan was fine with baby measuring exactly the same as the IVF due date. There was a plan put in place for any future pregnancies in a follow up appointment after my tfmr, I assumed the hospital would just action it straight away but I appear to have fallen through the cracks and they did not arrange the additional scans recommended by genetics or arrange for a dual appointment with fetal medicine and cardiology for my 20 week. I had to call the hospital that does the fetal medicine scan and arrange it, the hospital's are in different trusts.

Because we didn't get our additional scans we booked a private reassurance and gender reveal scan at 17 weeks. We found out our baby is a little boy and I specifically asked if the sonographer could show us his stomach bubble because they could never visualise Ethan's due to oesophageal atresia which is part of vacter association. I also asked how many blood vessels were in the cord because Ethan only had 2 which is linked to kidney problems which he also had and us also part of vacter. She showed us our baby's stomach, his bladder and confirmed a 3 vessel cord so we were relieved. One week later and I was looking at the scan pics, I know the black bits are fluid filled spaces and was trying to figure out what exactly I was looking at so googled fetal stomach bubble, I then saw an ultrasound puc that looked very similar to ours and the baby had a congenital diaphragmatic hernia with their abdominal organs moving into their chest cavity, this only had a 50% survival rate. It felt like all the blood was draining out of meand I had a panic attack, I have managed to convince myself that our baby has this and us going to die too. We have our appointment with fetal medicine for our anatomy scan this Friday (20th) at 19+1 weeks, it is with the same doctor we had for both our other sins which is good. I rang his secretary towards the end of the day on Friday just gone in a panic asking if he could take a look at our private scan pics and I have emailed them and all the videos because I will drive myself insane waiting a week with this fear in my mind. She said he will ring some time tomorrow afternoon and to call at 1400 if I haven't heard anything. I'm really hoping he tells me to calm down everything looks ok, I really really don't want to be right, I don't think I can handle having to make another tfmr decision or face another loss. I am so scared for this baby and the nightmares and flask backs have come back with avengance. Thank you whoever started this support thread and anyone who reads and responds to this post, sorry if it's all jumbled, my head is not in a good place and my thought processes have not been normal for me since we lost our son last year.

@Tigger85 Really sorry to hear your losses, especially after IVF. What a journey to go through! I too had a miscarriage and tfmr before conceiving this baby. I can relate on how traumatic and anxious this pregnancy must be. Do you have a rainbow clinic in your trust? If so could you ask them to enroll you to it. You can have extra scans, appointment with consultant and more mental and physical support through them. If you had a bereavement midwife, you can enroll through them. I don’t know anything about the condition Ethan had, but do you think the diagram hernia would be something obvious for the sonographer to pick? I hope the scan with the foetal medicine goes well and you feel reassured. It is good that you are having it with the same doctor. Sending you virtual hugs! XX

@Alice40p I'm so sorry you have gone through very similar with a miscarriage and a tfmr. I have never heard of rainbow clinics but I will ask, my partner and I have been refferred to the perinatal mental health team which the trust had only had for around 1.5 years. I don't really trust the main hospital that I am under, with my tfmr son they were not going to give us a dating scan until I was 17+5, we had to really fight to get it at the right time to do the screening for downs, Edwards and patau. The 20 week we had with Ethan they just told me he had a kidney ptoblem but not to worry his other one looked fine and sent me home with no explanation. After Ethan died I had retained placenta which they refused to do anything about for 12 weeks even though I was heavily bleeding and passing chunks of rotting placenta that absolutely stunk on a weekly basis. They were going to make me wait until 16 weeks post partum before even doing a scan but my partner got the rage and rang them every hour on the hour until he was passed to a consultant who magically arranged for me to be seen the next day. They still refused surgical management due to covid but luckily the last few pieces came out with medical management. Then there's the fact they completely failed to put the pre arranged plan for this pregnancy into action and we have had to arrange the anatomy scan with fetal medicine and the fetal echo with cardiology ourselves. I haven't even spoken to a doctor yet despite being on a high risk consultant led pregnancy. When I was pregnant with my living son I had an appointment and quick scan with a doctor around 16 weeks purely because he was IVF concieved and they said I would need to be induced on his due date if he hadn't already arrived be ause IVF babies are more likely to be stillborn if they go overdue. Ethan's condition heterotaxy is when the left/right coding in the body goes a bit wrong and you end up with some organs on the wrong side of the body, completely absent or parts of organs in the wrong place. It caused him to have two left sides of the heart, blood vessels missing, blood returning to the heart in different vessels than they should, blood returning to the wrong side of the heart, arrythmiad, a twisted gut and an absent spleen. His condition vacter caused him to have half formed vertebra in his spine, kidney problems, bladder problems, an imperforate anus, his stomach not connected to his oesophagus and problems with the formation of his genitals. His only normal organs were his brain and lungs. The fetal medicine consultant will be doing the scan for this baby himself so I am very confident he will pick up a diaphragmatic hernia or any other abnormalities. He has been doing his job for many decades and is very skilled and also very kind. I am just very scared about abnormalities, and I am prone to worrying and obsessing about things anyway, it's been something different but very rare everytime. it's hard to think I could ever have a normal pregnancy when everytime something has gone horribly wrong for unknown reasons. We know our genetics are fine as are both our boys genetics. Despite finding absolutely nothing wrong genetics still said there could be an up to 25% risk of reoccurance.

@Tigger85 I'm sorry you are going through this. Pregnancy after loss is so traumatic. I hope that the consultant was able to put your mind at ease today x

@Brooklily - I am so glad your scan went well xx

@Tigger85 - I really hope the consultant was able to provide you with some reassurance today.

All, thanks so much for your advice from my last posts, it really is appreciated.

We have received both our NT combined and nipt results back
, and they came back as low risk. I am so thankful and feel like we’ve overcome a few more hurdles. I shared my news with my boss today and he was so supportive which was appreciated. We’ve decided to tell our parents and leave it at that and see if we can keep it under wraps until after our 20 week scan. I’m hoping the next 6 weeks fly by.

I hope you’re all doing well xxx

@Tigger85 what a traumatic journey you have been through! It is very normal to feel anxious about pregnancy after lose. If you are not very happy with the mental health support that your trust is offering, you could get one through ARC or Sands. It makes me very annoyed that they are not taking your situation seriously! I hope your scan with the consultant goes well and you get some reassurance from it.

It is good that the problems you had were not genetical, that puts this pregnancy on higher chance of being “normal”. Do reach out to us if you want someone to listen to you.

@Alice40p @URMysunshine4 @Seahawk80
Our consultants secretary rang us towards the end if the day and said our doctor smiled and told her to tell us that he will give me a full report with his own eyes on Friday and that it was nice to see our scan pics and videos. This seems good to me and I have probably scared myself stupid over nothing at all, I expect he wants to give us the good news in person. He did tell us at our follow up from Ethan's tfmr that he hoped to one day do a scan for us and tell us everything is fine. I don't think they aren't taking things seriously, my community midwife has been great, I know the consultant we will see on Friday is great and I trust him fully. We are under 3 different hospitals, two in Wales, one in Bristol. It's just the main hospital we are under has let me down in the past for everything maternity or gynae related and for some reason haven't followed the pre arranged plan. I find it difficult to trust them.

@Tigger85 that sounds very positive! Keeping everything crossed for you! xx

@URMysunshine4 great news on your NIPT!

@Tigger85 That sounds promising. Hopefully the consultant will be able to give you good news on Friday. The treatment you received from the hospital sounds very frustrating though. Hope things improve for you in that respect too. We were under two hospitals in Bristol and one was brilliant and one less so...

I had my coil taken out this week! We're still not "trying" trying, and we're still using condoms as we have lots of stuff to sort over the next couple of months, but suddenly I feel a bit weird that I could potentially get pregnant now because the IUD is gone. I still can't quite believe that we are actually going to give it a go again (although DH is still understandably apprehensive so if at any point he says he can't do it then we'll have to rethink!). Strange days indeed.

Hi ladies,
just thought I'd update you. My gorgeous rainbow baby Nathaniel was born Fri 27th by ELCS at a hefty 9lb 8oz.
I can't describe the feeling of pure contentment since his arrival. He's filled such a massive hole in our hearts.
I'm keeping everything crossed for you all and sincerely hoping you get the same joy you all deserve xx