22 weeks and waiting for amnio results

[EAnne]

I really need some help and support and due to the Christmas period there is little professional support out there so I’ve turned to the internet. Had my 20 week scan the week before christmas - everything fine up until then. Was told at the scan that baby had an exomphalos and this could mean further complications such as chromosomes problems. We were then told to just go home and wait to see if a specialist would see us. They phoned the next big hospital that has a FMU but because it’s Christmas they wouldn’t accept us. Then asked if we would travel to a hospital that would. I said yes we would go anywhere. Finally got a call to say a hospital would accept us on 27th December which we said yes to. We then spent a week of hell waiting to see this specialist. Christmas completely ruined. I’ve just been in bed and locked myself away from the world. I can’t see anyone. I’m visibly pregnant (22w now) and don’t want to see people.
Went to the appointment Thursday for the dr to confirm exomphalos and also concerned about the amount of fluid around the neck. It’s now over 7mm. This has never been mentioned before. All pointing to chromosomes issues. We then opted for the amniocentesis test which he just did right there and then. We then were told to go home and wait for results. So it’s saturday now and we still have no idea. I can’t get out of bed as I’m so distraught. I can’t believe we have got this far and in this situation. I can feel baby moving and it’s just heartbreaking to think it might not survive. They said we might have the results on Monday (new years eve). What a wonderful way to start 2019. We have already had the discussions and conversations about what we will do if the results are the worst. I just feel so alone and so helpless. Everyone knows I’m pregnant and I’m scared of the TFMR. Any advice or similar stories would help.

[KingIrving]

I just read your post, and couldn't just go away.

I lost a baby at 22 weeks but it was a MC not a termination. Hopefully, you will receive good news about the genetic test and that you will only be left with the exomphalos which is something that can be corrected with surgery.
Your choice of terminating or not is right one way or the other. It is between you and your husband/partner, nobody else. It is a big decision that will affect your lives for decades.

If you opt for termination, you will have to give birth. This is something I wasn't prepared for. They can't put you to sleep and take the baby away. It is painful and the pain in your heart will be even greater, when they will tell you to push and you don't want to push. Giving birth vs surgery means you can start trying for another baby very soon. I was pregnant 3 months after losing my first. With surgery you have to wait a year and there is always the risk of adhesion.

People around you will quickly forget, your husband might even forget, even if you will always remember the date. People won't judge. some will be extremely ignorant and stupid in their comments, others will avoid you for a while because they are embarrassed .

I really hope you will receive good news on Monday.
Big hugs from Sydney, Australia

[EAnne]

Thank you. I really appreciate your words.

[Vika1985]

So sorry you are going through this. I hope whatever the issues are they are fixable, but if not then make sure you consider all your options, you don't need to rush ahead to TFMR.

[Ceallaigh]

@EAnne I’m sorry to hear you’re going through this. Hopefully the amniocentesis results will come back positive and it’s just the exomphalos which they can do something about.

I’ve recently been through a tfmr and I know how all-consuming the panic and worry is when you’re waiting for test results - you do whatever you have to do to get through.

I know it’s hard to think positive when you’re going through something like this but you can still have a happy ending. I hope you get good news on Monday xx

[EAnne]

Everything the consultant said points to a baby with serious chromosome issues and I know we will have to think about our choices. However if we do decide to not proceed with the pregnancy I just want it over as soon as possible. It’s just to know what KingIrving said in that if I give birth we can try again sooner. I’ve tried to read up on it just so I’m more prepared. When we found out what we might be facing I had no idea. I was completely clueless. This is my first pregnancy. I worry about the future. If this baby isn’t meant to be I worry about us having kids and what if that can’t happen. I’m 32.
Caellaigh - how did you cope after your tfmr? How did you cope for the wait for it?
I’m sorry I sound so negative but I also already feel I know the outcome we will have.

[SylvanianFrenemies]

@eanne my heart goes out to you. Sadly I can relate as I'm waiting for a date for tfmr in a week or so. I'll be about 17 weeks. I find going out and about with my bump hard and am covering up in baggy clothes.

Waiting for results is agonising. I found some relief (mixed with heartache and sadness) when what was suspected was confirmed. I think it was because we had certainty, and a feeling that this terrible "choice" is the right one. I do so hope that you get a good out one from the amnio, though. I'm getting our final round of results on the 31/12 too, but we already know the outcome from other tests etc.

I found the ARC helpline amazing, the lady I spoke with seemed to instinctively know what I felt and needed. It was a great comfort.

Baby centre have a tfmr board which I'd recommend if this is what ends up happening. To join you have to go through a generic membership process more geared up for happily pregnant people. I'd suggest just putting in a fake birthdate for an older child to avoid getting painful newsletters etc.

Thinking of you. Feel free to PM.

[Vika1985]

So sorry you are going through this, OP. Please accept any real life support you are offered from the hospital, in some areas there are specialist perinatal psychologists, and their help can be invaluable. In most circumstances chromosonal issues are random and unlikely to reoccur in future pregnancies, so just concentrate on surviving the next few days and don't worry too far ahead.

[KingIrving]

I actually found more support online. It was easier for me to open up to strangers and reading about how they were coping helped me.

I still remember the words of a stranger who wrote that one day it won't be the first thing you think about in the morning and one night you will realise you haven't thought about it all day, and it is ok.

Deciding for a termination requires a lot of courage and I would add a lot of heart.

Right now, in front of me, Ds1 is sitting in the armchair reading a book. He is 15. Upstairs, DS2, 12, is still sleeping, after having spent 10 hours in freezing waters surfing yesterday. Between my sons, I lost another baby at 16 weeks. My sons know about their missing brothers (all boys!) and one of their favourite and recurrent question is "would we be here if you hadn't lost them" and the answer is of course, " no" and somehow it makes them very happy. Boys are weird, but in this case it is true. My babies are not here, but I have two gorgeous boys.

[Ceallaigh]

@EAnne I had a tfmr at 15 weeks for T13 just over 9 weeks ago. The hospital recommended a medical over a surgical tfmr so I had to give birth to my little girl. I’m so thankful that I did that though as I got to hold her and see her for a little while. I’ve been signed off work since, and it has been so tough but I’m just throwing myself into ttc in the hope I’m pregnant again soon. I’ve just turned 34 and with no living children, I do have moments of panic but many women have children well into their late 30s and 40s so at 32, you’ve got plenty of time left.

Also, all hope is not lost yet, I know you may feel like you can’t possibly get any good news after receiving bad news but until you get something conclusive, there’s always hope of a positive ending.

I do feel for you, no mother should have to go through this. Feel free to PM if you’d like. Also the ARC charity are amazing and have a helpline that you can ring xx

[iamloading]

Huge hugs. I had a tfmr at 25 weeks just over a year ago now. Like you I was 32 at the time. Here if you need to talk. As a story of hope I feel pregnant unexpectedly 6 weeks after the tmfr (unexpectedly as I had two years of fertility treatment to conceive my first) and my baby daughter is asleep next to me now. Thinking of you xx

[itshappened]

I went through something similar at 17 weeks. If there are any questions you have which I can try to answer, then let me know. I'm so sorry you are in this position.

[needsomesleeps]

@EAnne I don't have useful advice to offer but I couldn't read & run. My situation wasn't the same as yours but your post brought me back to this time 2 years ago when the 20 week scan showed hydrocephalus which then led to questions of underdeveloped areas of brain/genetic issues so extensive tests followed. The waiting for answers & all the uncertainty is unbearable & I felt that nobody understood so well meaning messages from family & friends annoyed me even more & I ended up not talking to anyone other than DH for a few months. It looks as though you've already had a few lovely ladies reply but please PM if talking would help.

I hope that you get some answers very soon & at least then can formulate a plan. All the variables and uncertainty are just awful. My thoughts are with you. I know it's easier said than done but try not to google. I drove myself crazy trying to predict outcomes based on google searches without all the information before results were back

[KingIrving]

Good luck for your results.

[EAnne]

Thank you @KingIrving. I feel honestly sick to my stomach about it all. I hope they call tomorrow. I just need to know what I’m dealing with. I feel like the last 10 days have been the longest in my life but have also merged into one big nightmare. I’ve hardly slept and just spend my time in bed trying to deal with this. So glad I posted on here though because all the messages really help.

[Cantchooseaname]

Hope the news tomorrow is positive. I haven’t been where you have been, but wanted to send some love your way.

I hope you dh is supportive, and that you find a path through this all. There are lots of us right beside you if you need us.

[KingIrving]

@EAnne if you can't sleep, pop here or send me a PM and we will chat. It is already the 31st here in Sydney and hopefully when I will be watching the fireworks tonight, there will be one shooting very high with a reassuring result.
It is 9 am now so happy to keep you company if you have another sleepless night.
(((hugs)))

[notapizzaeater]

Didn't want to read and run 🤞

[KingIrving]

Do not hesitate to call them if they haven't done so by 12pm.
Lots of hugs and best wishes

[Vika1985]

Hope you are ok, OP xx

[Coronapop]

Just to say I truly feel for you. Sending sympathy.

[needsomesleeps]

@EAnne thinking of you today. Hope you get some answers

[Cantchooseaname]

Hope you got news today, and are making sense of whatever it is.

[EAnne]

Everyone. They have just called. It’s this time on New Year’s Eve. I can’t believe it. All chromosomes have come back normal. I’m in shock as I had prepared myself for the worst. So the baby will still need surgery for the exomphalos and they want me to have a heart scan for the baby at a specialist unit but no chromosome issues.
Thank you everyone for all your kind messages and support. We aren’t out of the woods yet but without this support I’m not sure how I would have got through the last few days.

[Vika1985]

Such brilliant news. What a relief. Xx

[rightreckoner]

Oh my goodness. What a shock - in the best way. As you say, not out of the woods yet, but that’s wonderful news. I don’t suppose you’ll recover your equilibrium in time to enjoy NYE but hope that 2019 now looks brighter for you than you had feared.