Support thread for women who are pregnant or TTC following a termination for abnormalities. Thread 7

[Kiki275]

Welcome to the newest thread of support for those ladies who are pregnant or trying to conceive after terminating for abnormalities. 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.

Not sure if it'll help but I found that I had a craving for raw carrot sticks and ate a least a full bag per day but it also helped indigestion coz I mainly got it coz I needed to eat and carrot sticks were a quick healthy snack! Also although I was in iron tablets I didn't get bunged up coz carrots are high in fibre just thought I mention it in case it helps anyone! Xx

@Dia12 I’m feeling a little more positive but still scared out of my mind! When is your scan? I don’t have another one until 21st.

Struggling at the minute, nightmares, no appetite and not sleeping well. Thinking of everyone here.

@AlexaPlayWhiteNoise oh no! I had that just after tfmr. I have also been struggling this week. Don’t know if it is because I’m having what I think is my first period. I am now having very heavy flow and am feeling physically and mentally low! Hope we come out of this phase!
@Dia12 and @Mummabear40 how many weeks are you now? Perfectly understandable that you are feeling anxious. Hopefully you will get to your second trimester and past the 20weeks scan and feel more relaxed about this pregnancy.

Carrot sticks! That's a really good idea MummyBearBoo, thank you. I'm eating far too much so this should help.

My scan is on the 12th, I'll be 10weeks by then 🤞🏼🤞🏼🤞🏼🤞🏼

I'm sorry you're having nightmares AlexaPlayWhiteNoise. Are you getting any counselling or speaking to anyone?
You too, Alice40p? I'm sorry you're having a low phase.
It's especially difficult because of lockdown isolation. I tried some guided meditation at night and it helped me sleep.
Also spent some time writing my feeling down on paper every day. I did always shred the paper after, and that made me feel like I was shredding some of those feelings too.

Seen “Headspace Guide to Meditation” on Netflix yet?

www.netflix.com/title/81280926?s=i&trkid=13747225

Hello I’m new here.
We terminated last year for 22q11.2 (Digeorge syndrome) and tetralogy of fallot. It was the worst time of my life and something I wouldn’t wish on my worst enemy.

We now are 23 weeks and have found ourselves in the exact same situation! I am devastated angry and I do not know what to do. This time round feels so much harder than last time and I don’t know how we’ve found ourselves in this situation. I’m so angry at the world.

We were tested to see if we were carriers of digeorge after last time but neither of us were so we were told we didn’t need extra scans or genetic screening except for a heart scan at 23 weeks with our fetal medicine team. At my 20 week scan there wasn’t a great view of the babies heart so I was told to come back. When I went back they had concerns but I was told it was nothing like last time and not to worry. I saw the consultant a few days later to be told we were facing another tetralogy of fallot. We opted for an amino and were referred to gosh. As we aren’t carriers the doctors all seem as confused as us?! We have been told it could be a mosaic variation which wouldn’t show up on a blood test as it lives with the testicles or ovaries?! Why weren’t we told this?!

Has anyone ever been in a similar situation?! When I’ve asked about whether they’ve dealt with a reoccurrence like this before I’m not getting any answers. I’m so frustrated.

I’m sorry for all your loses and sad that we find ourselves here.

@AlexaPlayWhiteNoise I don’t have any suggestions because I feel like I’m just badly muddling through life atm. But just wanted to say I’m thinking of you, the pain from this experience is so huge and heavy it’s difficult to process at times.

@Alice40p I was shocked at how heavy my period has been but it’s starting to settle. I hope yours is too and you’re feeling a bit better.

@Unicorn1997 I’m so sorry you find yourself here and facing a similar situation. I can understand your anger - going through this once feels so unfair, I can’t imagine what it would be like to go through it again. Are you now awaiting your amnio? It was the waiting and uncertainty I found the hardest when we had our TFMR (our little girl had triploidy).

@Alice40p I’m 9 weeks now and feel so terrible. I’m just focusing on my next scan date to get through the worry.

@AlexaPlayWhiteNoise I also had this after my TFMR so I know how you feel. Mine did pass but I can’t remember how long it took.

@Unicorn1997 I’m so sorry to hear this, I can’t even imagine what you’re going through. This is my first pregnancy since our loss so I don’t have any experience of reoccurring issues. Tbh that’s my biggest fear with this pregnancy.

@Unicorn1997 I'm so sorry you find yourself here, for the 2nd time as well. My tmfr wasn't for anything genetic so I have no advice. I couldn't read and run though.
Have you posted on the ARC forum? If not, that would be a brilliant place to start for similar stories xx

@Unicorn1997 sorry, you find yourself here. I had a miscarriage earlier last year and tfmr at the end of the year. It was terrible processing both but the doctors thought my miscarriage and tfmr are unrelated. It must be so hard to go through 2 tfmr. From what I read, sometimes if you have a mosaic the chances are that it is inherited. Perhaps they would do some investigations? There is someone in this thread who had two tfmr and then had a healthy baby, so there is hope.
If I get pregnant again, I think this would be what I would be anxious about too.
@Holly341 and @AlexaPlayWhiteNoise hopefully we shall come out of this. I think the lockdown makes it worse! I found writing down as @Dia12 suggested helpful. Thanks @Dia12

@Alice40p lockdown is definitely amplifying things. I can’t go anymore bloody walks round the park. During everything in December I just wanted a cuddle off my mum and not having that was really hard.

@Holly341 yes we are awaiting amino results and it’s awful isn’t it. This is the hardest part of thinking positively and negatively constantly. It’s so emotionally gruelling. The doctors are pretty sure it’s the same syndrome so just trying to prepare for that. Sorry to hear about your little girl ❤️

@Mummabear40 congratulations on your pregnancy! I’m sure you won’t have a reoccurrence as from every doctor I speak to they are just as shocked as us this has happened.

@kiki275 thank you I will look at an arc forum. It’s hard to find anyone in similar position to us!

@Alice40p
Sorry to hear what you’ve been through. I had a miscarriage after my first Tfmr and it’s so bitter. Yes so once we get confirmation it’s the same condition we will be referred to genetics team and I believe it’s a 50% chance any pregnancy will be affected the same which would make sense as to why we are here again. It’s just so sad as I have a daughter from a previous partner and my partner has no children so that would be really difficult for him.

I think the hardest part this time is myself and partner not agreeing on an outcome. Some days I’m split right down the middle but most of the time I’m wanting another Tfmr because of the same reasons before but he can’t go through it again and feels we could do it. I just don’t see how the situation has changed.

Thank you all for your responses x

I'm so sorry to see so many new names on here... 😔

@Dia12 thank you, that's very sweet of you. I'm doing ok I think. Still waiting for the biopsy results, not sure what I'm hoping for.... but due to my long cycles we might end up actually only pausing ttc for 2 cycles, not 3. But either way, I feel a bit hopeless at the moment. I don't think that there will be another baby in our future and I'm finding myself wondering whether we should just stop trying.
I've gone down so many wormholes recently and there are still questions about our TFMR baby that will never be answered, one of them them is that I suspect the nurse cut off the Omphalocele before she wrapped baby in the little blanket and brought him back to us. Some parents might choose not to see any physical abnormalities but I really needed to see it with my own eyes and not only on the scan. The consultant almost laughed at me and said "when the baby has passed, sometimes they omphalocele falls back into the abdomen." There was no evidence of it on his little belly (other than what looked like a thick umbilical cord - sorry to be so graphic) and it just makes me wonder.... but I guess it's normal. We all kind of want to doubt that this is real and actually happening to us. Almost a year on and 4 early miscarriages later it still feels like I'm looking down at someone else's life.
I really hope your scan goes well. Sending love xx

I'm really saddened to hear of what you're going through @Unicorn1997. I'm afraid I don't have any experience of tetralogy of fallot but do know how difficult it can be getting answers.
I would be equally angry. Really have everything crossed that the amnio results come back with the all clear 🤞🏼🤞🏼🤞🏼

Strangely enough I've been thinking the same about my tfmr baby. I didn't have the courage to look directly at him, but DH tells me he looked "normal" and just the other day mind just took that spiralled out of control - made me really question whether the amnio results were accurate? But as you say, you don't want to believe it's real and how you ended up here.
It's been a long journey for me too and I've forgotten what it's like to be carefree and just content with my life. However, as painfully difficult as it's been, I chose to continue because I only have a few years left before Mother Nature takes that choice out of my hands. So with gritted teeth, I'll give it what I can until then.
I hope you can use this time to refresh and relax and know that your strength and courage will get you through this.

Forgot to tag you @NoCallerID

@Unicorn1997 -yes there is hope I had 2 TFMRs due to a genetic issue with odds being 50/50 of needing a TFMR this time- this baby was healthy and she is now a chatty 3 month old
I felt devastated the first time and broken the second time (i almost was I was bleeding out and they were prepping me for emergency surgery as they couldn't stop the bleeding but luckily they managed to slow it enough so I could wait til the next morning to go have the surgery then had 3bags of blood-thanks to all B+ blood donors).
It is really hard but time does help I've now been pregnant 4 times and have 2 healthy babies that's why we tried again as we had one healthy 2 not so we thought we should at least try a 4th time as odds of 1 in2 and 2in4!!I
I would also feel the two little boys we lost would have died in vain if we didn't try again!
Good luck and take care of yourself I gave myself til past the due date of the last TFMR before trying again but still felt unprepared as we got pregnant straight away later in the same month of the due date! Thankfully it worked out for me with odds stacked against me (had a 1 in 2 chance of genetic condition,1 in 4 chance of miscarriage and 1 in 100 chance of T21 as first TFMR also had this as well as genetic condition) so there are happy endings!! Xxx

@Unicorn1997 the waiting is exhausting. You swing from preparing for the worst to trying to protect yourself with some optimism. You need to take it day by day. I hope you’re able to get your results quickly. How’s the input from your hospital team been? Do you feel well supported or are you awaiting input from genetics/gosh now?

It feels like everyone’s having a tough time atm. I’m hoping 2021 brings everyone some joy, we all deserve it.

@Dia12 thank you for that! In our case the tetralogy of fallot is pretty straight forward, it’s usually one open heart surgery then possibly another in 20 years. It’s the fact the digeorge syndrome can have effects on the immune system along with about 180 - 200 other issues.

@MummyBearBoo I’m so glad you had some happy news following such a shit time. It’s also nice to hear some positive outcomes when the world seems so bleak at the moment.

@Holly341 definitely is a day by day thing. It’s a rollercoaster. The hospital team have been ok? I don’t really know what else they can do, they’ve offered their apologies and assured us they will support us during our decision (depending on amnio results obviously). Gosh have been amazing, They can’t believe we are this far along and this has happened. In regards to genetics they will speak to us depending on the amino results so right life just is a waiting game it seems!

The thought of going through this again and leaving the hospital without my much loved and wanted baby kills me. Also the thought of having to tell my 6 year she won’t be a big sister again breaks my heart

@MummyBearBoo I always love 💕 reading your story. It is so inspiring! It made me smile before going to bed today!
@Dia12 I hope things work out well for you this time around.

Thank you Alice.
Agreed, such a lovely happy ending xx

Thanks @Alice40p hope everything works out for you too!
I've been an in patient at least once every year since 2015 with babies, TFMRs, kidney infections, the embolisation following a TFMR and I even caught mumps off an unvaccinated person I had MMR but the mumps part only work if everyone is vaccinated and this developed into pancreatitis and a swollen ovary so I was in the infectious diseases ward for 3 days! So I'm really hoping 2021 is the start of a hospital free journey - my baby making days are done I don't want any more I could not got thru it again!! Xxxx

Hi all,
had my booking in on Friday so feel officially pregnant now. I'm going to be consultant led for various reasons, although I can't remember any specific ones. The MW is also trying to get me an early reassurance scan through EPU. I don't qualify for one directly but they'll do it if the Rainbow clinic refer me, they are there for losses after 24wks so I don't really qualify for that either. Will be nice if I do, I don't really trust the private clinics around here.
Trying to get a completed maternity exemption form is proving difficult too. I've been put on LevoThyroxine purely because I'm expecting. That said, I'm also struggling to get a repeat prescription for that and it's running out shortly. Not had any response from the Endocrine referral either.
In other news, I am eating my body weight in beige food. Constantly craving salty/savoury foods. We've also told a few people including PILs, which actually is a relief and has brightened the start of their year up incredibly x

@kiki275 that’s great and you sound more positive which is great. I also found my booking in appointment good and it made things feel real.

I found the early scan reassuring so I hope you get one.
My husband is on levotyroxine for hypothyroidism and found his condition really improved after not too long on it.

I am also eating my body weight in beige food, particularly buttered crumpets!!

@Mummabear40 thanks. It's a case of MMCs etc happen to other people, so why won't it happen to me, a tmfr has?
I wish we all had a little window we could just look in and see what is happening x

@kiki275 exactly that, we’ve now experienced the worst so we expect it again.