How did it go so wrong? Advice? Answers?

[Lemoncake5]

I want to just share my story and maybe this will help someone some day. Firstly i havent slept in the last few days due to anxiety so please excuse any errors as its currently 3.30 am.
let give some back story i am currently 32 and my dh is 38.
after two years of marriage we decided to try for our first and we were successful on our first attempt but i ended up having a natural miscarriage around 8 weeks. After lack of periods and random periods i became pregnant with our DS 8 months later. It was a very smooth pregnancy and he was born healthy at 38+2. this was in 2015. Fast foward to 2018 we started trying and nothing happened for a year and a half but i was given clomid for 6 months and that didnt work. Then we went private. I was told i had PCOS and ivf would be the best route. So i did egg retrieval number 1 to only get 2 embryos. I did a fresh cycle which didnt work and then a frozen cycle which didnt work. My consultant believed i had an auto immune issue and changed my protocol because he believed my body was attacking the embryo. I then did a second egg retrival which resulted in 4 embryos. We did a fresh cycle and i became pregnant in February of this year. Now this pregnancy was filled with anxiety and stress. I bled gush of blood twice and each time i went for a scan baby was fine but i had subchrionic hematomas.
when i had my nhs scan at 12 weeks i was told abnormalities were seen such as odd cyst in stomach/ waist down legs werent seen etc. it wa a terrible and cold experience.
i had a private scan a couple of days later to see a baby jumping around feet with toes.
i was referred to foetal medicene dept and seen at 14 weeks which also said still too small come back in 17 weeks which made my heart sink as she said it doesnt look like normal development. I held on to hope. When i went to my 17 week scan my world came crashing down to be told i hd an abnormally large placenta and i could see the baby squashed in to a corner. There was no amniotic fluid and kidneys/ bladder could not be seen. We requested to see other specialists and left the hospital in shock and i was a complete emotional wreck. We were told this pregnancy isnt viable as its too early to do anything and if we continue I could suffer severe health complications or worse and baby would not even live outside the womb without development of lungs. I feel like so many things went wrong. I had a private scan yesterday just to get closure and the sonography was also a genetic councillor and who was so patient with me. But it hurt i could see baby all squashed in a corner, no fluid not able to freely move. Fast foward to today and i am awaiting my induction on thursday where il be 18 weeks. I contacted my clinic who were shocked and my consultant believes this is a chromosomal issue and not genetic as we have a healthy 6 year old. I am scared about my other 3 frozen embryos but iv been told these issues ive come across in this pregnancy are most likely chromosomal. I have opted for a post mortem to get some solid answers. So here i am shocked and emotional. I am so lucky to have a family support system and a wonderful husband. We want to try naturally for a few months and then look in to a frozen transfer in 3/4 months time.
In the meantime we want to go on holiday and just reset. i have so many questions and if only this or if it could've just become a natural miscarriage earlier on without me having seen the baby at so many scans. Im sorry for rambling on but i just felt how can any of this be fair. I just wish i could look in to the future and see myself with at least one more child. Im a secondary school teacher and hope to return to work after two weeks but i will iwll take my time to physically and emotionally heal.

I was also given low risk for Edward and patau syndrome but high risk for downs at 1 in 10 with my son i remember it was very low risk like 1 in 10,000. But i was told ivf places me in the higher risk category naturally.
i hope i can come back and update this thread with a happy ending one day. I feel like time isnt on my side and maybe it will never happen.

So sorry you are going through this 💐

I couldn't read and run (and also awake at silly o'clock). I'm so so sorry you are going through this. Make sure you take time to process it all, self referring yourself for therapy might be a good idea, or take anything they offer. A holiday and reset sounds ideal - your DH will be grieving too so time together as a family with your wonderful Child will be very good for you.
By the sounds of it, it just sounds like an unfortunate situation that no one could have foreseen. Unfortunately some pregnancies just aren't viable. It has always been the case and I'd imagine will always be the case that some babies just aren't healthy enough to make it to birth/long afterwards. It is not something you have done. It's really important to remember that. If the doctors are saying it doesn't look genetic I would hold onto that until you have evidence to the contrary. Hopefully the autopsy will provide answers. Remember you have had one successful and viable pregnancy and lovely DC to show for it. So it is possible. Hopefully you will go on to have more, but we never know what life is going to throw at us. It's not something we can control, as much as we want to be.
Take your time, look after yourself and I hope the news from the autopsy is that it is not genetic and you can have a successful transfer going forward. I'll be thinking of you.

Thank you❤

Thank you for your reply. Honestly it helps to read these supportive comments. I know il be okay and be able to move foward but im so scared of what is to come on thursday. Everything has just happened so fast. It will ruin any excitement and hope for or if i have any other future pregnancies. If i had one issue to deal with but so much went wrong and i wonder if it had anything to do with my auto immune?? I took ivf medication including steroids and blood thinner until 12 weeks and i was told i didnt need to take any longer. If i took them longer would this have been prevented?? So many thoughts and im tossing and turning and unable to sleep. I will take up the offer for counseling.

I replied to you on the other thread, but if you need someone to speak to, I’m here 🤍

@Lemoncake5 you can't beat yourself up for following medical direction. Otherwise you have to potentially not follow any information you are given. Taking them for longer may have caused other issues. Someone once said you can what if yourself to death, but it doesn't change what is. it sounds like you did absolutely everything right and unfortunately the circumstances just weren't right this time. Sending you thoughts and love for the next few days until you get more answers. I totally understand you feelings about future pregnancies being ruined - you will always have concerns, that's totally natural. Hopefully therapy will teach you how to manage those concerns going forward x

You’re right. The sadness comes in waves. One minute I’m so positive and hopeful and the next I can’t explain but it’s like i hit rock bottom. I know deep down it wasn’t anything i did. It just hurts after a year of ivf we finally got there only for this to happen. I think it is Potters syndrome. My husband has been incredibly supportive but it’s like i need constant reassurances when i know no one can predict the future. I hope better days are coming. I feel so much guilt with my DS so i sat outside with him and worked on a crafts project. I think i will feel better after Thursday i can then focus on recovery. I think one reason why i feel like this is because we had so many scans and prior to 12 weeks baby looked completely fine.

Hi @Lemoncake5
I had a tfmr at 26 weeks in March. It's such a hard time and you question everything you did. Our little girl was also an IVF baby and I was devastated to find out she had a chromosome deletion and severe heart defect. I couldn't have let her suffer but I wish I hadn't had to make that choice.
The truth is we didn't do anything wrong, that these things happen with no rhyme or reason and that's difficult to accept.
I think the holiday is a really good idea, but don't feel you have to rush back to work.
Better days will come. I am 12 weeks on. The last week has been hard, I'm on hormones for a frozen transfer and our due date is also coming up, but it's still not as hard as it was right at the start. I hold onto that.
I would also second counseling, I've found its helped validate my grief and feelings.
I wish you all the best for Thursday, I know that sounds weird. I found seeing my daughter gave me peace, I realised that no matter how awful the choice I made was I couldn't have watched that perfect baby suffer. Listen to yourself in what you need during and after the birth in regards to time, pictures, seeing them etc. Again there is no right or wrong, just what you can manage in the moment.

I am so sorry for your loss. You are strong and i really do hope you have a successful transfer.were you regular with your cycles again? Im scared i wont be. When i had a miscarriage at 8 weeks naturally my periods stopped or id bleed a day or two but i was shocked to find iwas
pregnant at 9 weeks with my son 8 months later on. But iv been told i dont ovulate/regularly so as much as i hope maybe this will reset my body or the ivf medication will still be in my system i just dont feel hopeful and see myself going back to the clinic in september.

@Lemoncake5 I stopped bleeding two weeks after giving birth. Had ovulation signs 2 weeks after that and then my first period 2 weeks after that. So exactly 6 weeks after I gave birth. My 2nd period was exactly 4 weeks after my first one, even though they said the Prostap injection might have caused it to be either early or late.
We were unexplained infertility and had tried for 3 years before having our IVF cycle. We could have held off and tried naturally for a few months in the hope my pregnancy meant my body would know what to do this time round but tbh I just want a baby and IVF is our best chance so we just jumped back in.

Oh i would jump back in but my clinic has said after two cycles i can do a frozen transfer. But i want to also have my consultation and ensure my frozen embryos would be okay to go ahead with. This new protocol worked so im sure my consultant will say to go ahead with it. I just think in my head how long this process is sometimes. If we are succesful with a transfer then its the milestones and even then now i know can never be out of the woods until our babies are in our arms safe and healthy. Statistics this point for me now dont mean much.

I wonder if everything that was wrong was connected to the same thing? I had two hematomas but the second did disapear at week 12. But no amniotic fluid or development of kidneys/‘bladder is this still linked to the abnormally large placenta?? Was it becase the baby wasnt able to take nutrients due to no kidneys? So placenta became enlarged? It was so heartbreaking to see the baby squashed by it in one corner. No fluid to move around in. I cant get the scans i had earlier on out of my head to see everything ok in one week to everything going wrong in the next scan. But its torture if i keep thinking about this.

I really struggled to get out of bed today but i feel so empty my belly is much softer and smaller and i know its because of no amniotic fluid. I called my gp for a sick note but she was surprised with everything ive gone through these past few years. I saw her 3 years ago before i was referred for a hsg and clomid then i went private. She updated all of her notes and shared some kind supportive words. I felt better i could speak to someone about what ive been through who wasnt a family member/ friend. Ive arranged councilling for my self from next monday from my clinic.

@Lemoncake5 I'm sorry you're having a bad day. I remember being in a daze from our final diagnosis to the procedure to stop Kara's heart and then her induction and birth. I remember sobbing when my milk stopped and my breasts just shrank back to their pre pregnancy shape and feel. My body bounced back from the birth and that felt like a betrayal even though it was doing exactly what it was meant to. If Kara had been well I'd have been delighted by how I recovered, but she wasn't.
You're in that awful bit where you know what's ahead but you're just sitting waiting. It's torture, I'm so sorry you have to go through it.
If you haven't been in touch with them already, ARC is lovely and they have a forum you can join afterwards. I've found it really helpful.
I'm so glad your GP was helpful and you have counseling set up.
Take it easy today, there's nothing I can really say to make this better but take care of yourself.

I’ve always been the type of person to keep everything bottled up in all aspects of my life. Even after the two failed transfers i was able to carry on but this is so different. Im scared of what Thursday will bring, im scared of the future and not ever getting pregnant again but im scared of this happening again. I feel like a let down i feel sorry for my dh. I just wish I didnt have to go through the process that i am going to have to face. My stomach has literally gone half in size over night and a part of me wants to recover quickly and get fit but im mourning what i once had. I’ve never gone through something like this in my life. I just want to fast foward the next few months.

@Lemoncake5 I still want to hit fast forward even now. When it first happened I wanted to be here, trying again, having fertility treatment. Now I'm here I want to fast forward again. I completely understand your wish to hit fast forward. It's such a frightening time and the enormity of the feelings you have are terrifying.
I talk a lot but what I've realised is that I'm actually doing that so that I don't have to keep it all in my head but that I was talking about it as if it hadn't happened to me. I was actually using talking as another way to block out my feelings.
I was so scared going into the hospital but it was like my brain shut down, it was bizarre.
You're not a let down, you haven't failed. You were given a cruel twist of fate and placed in an unwinnable situation. You didn't do anything wrong and you haven't let anyone down.
It's hard to accept but sometimes these things just happen and there's no reason for it. It's just unfair.

Sands Online Community
UK SANDS forum has a section for termination due to incompatibility to life; there will be support as you grieve.

your baby is Always loved. Never Forgotten.

ARC
Antenatal Results and Choices charity
Offers support either online or by phone; magnificent charity offering boundless support.

I went today to the hospital today. The nurse was amazing and my consultant today was much more chatty. Nothing felt rushed they took the time to listen. My consultant was very reassuring she said time is on your side and everything else indicates you are healthy and ivf did work you can carry a child but this could just be bad luck and a good decision to do a post mortem. She said obviously ivf treatment will need to wait after a few cycles but when i asked what do you advise with trying naturally she said that is your choice there is always a chance of pregnancy regardless if i say i have PCOS. I am in a much better headspace since the morning. After the appointment me and my husband
went to get some bits and bobs for the hospital. I was not reluctant to take the tablet. I know in my heart its the right thing to do and we can only look ahead. Time doesn’t stop. Needless to say we are looking at booking a holiday for next month and that will keep me busy next few days in bed resting and recovering. I will come back to update just in hope maybe my experience can help someone and also hopefully one day o can come back to share i had a happy ending :)

Good luck for Thursday op, I'll be keeping you in my thoughts.

Thank you. Just hope its quick. I was told if all goes well i can be home friday afternoon.

@Lemoncake5 I hope everything goes as smoothly as it can tomorrow. Take care of yourself.

Thank you. Ive started getting stomach pains for past hour. I just want my body back now pre pregnancy. Amazing how much we do put up with when we are pregnant. Now i know its not viable i cant stand my body the back pain the sore boobs etc

I was given the pessaries almost half an hour ago. It really is just a waiting game. Ate a sandwich the hospital gave and i requested paracetamol. Really just want this over and done with and to go home so we can move foward. I’ve had an unmedicated labour with my son but i don’t know why I'm so scared of the pain this time. The midwife looking after me is lovely and she said to not worry about the pain and all pain relief is available. Strange enough i wasnt
emotional coming to the ward but i did get teary when she gave the medication because i thought what a shame, all that could have been but there isnt anything i couldve done to save this pregnancy, maybe thats what has given me
comfort for it not being viable so its a process of now moving on from this. I know i will be a much stronger person from this and i am so proud of myself for coming this far.

I did it. Baby was born in sack and placenta came out with it. My cramps last at least an hour then requested gas and air. I sat ip a bit and felt blood come out. Midwife still said its too early and it might happen tonight but about 40 mins later after pushing i feel so relieved