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Original poster

V bad odds for Edwards and Patau's syndrome... Scared.

109 replies

bayswatersophie · 21/03/2016 14:27

Here's the background...I am pregnant at 40 with my third baby. The other two pregnancies were plain sailing all the way, and two beautiful girls, no issues other than difficulties in getting pregnant in the first place. I was subsequently told by my doctor that I would not be able to get pregnant with another child and had made my peace with that. So I was beyond surprised to find myself 8 weeks pregnant this January... Unlike the other two pregnancies my husband and I felt very mixed emotions at first about this one... We had mentally moved on from the idea of a bigger family and were not thrilled at first. However, after a couple of weeks of living with the news we were happy and excited about this unexpected gift of a third baby. The 12 week scan was lovely and normal, good NT. I went ahead with the blood tests for the triple test and didn't think anything of it. It went down hill from there.... The results were mislaid between the lab and the midwife and when she re requested them to be sent after me pressuring her to get them (took a whole month) it turns out that the hormone levels were extremely low and that an urgent scan was recommended as they suspected a miscarriage or Edwards/ Patau's. I had the scan last Saturday and the doctor was pretty reassuring. Apparently no visible problems other than the fact that the baby is very small for term and they spotted one cyst. I felt reassured but booked for the Harmony blood test just to be sure. At my appointment today they took one look at the bloods and the scan and told me that I should have the amnio straight away as results would come in 48 hours, rather than wait for the blood test which takes 10 days. She said she was very concerned about the combination of my age/'retarded growth ' / the cyst and the bloods. She wouldn't give me a statistical chance for either syndrome as I live in France and apparently they don't give out the odds other than for Down's Syndrome (which is v low risk due to good NT and low hormone result) but her reaction made me feel they can't be good...The next thing I knew I was signing consent forms and lying on the couch waiting for the needle. Now I am at home going out of my mind with worry, googling and thinking the worst. I feel irrationally that somehow this is my fault and my punishment for not 'wanting' this baby initially...
Has anyone experienced anything similar and did it turn out ok? The next two days of waiting feel like torture....

OP posts:
AliBingo · 31/03/2016 09:55

This is a hard bit, being in limbo and dreading the next bit. Just try and keep busy and get through today, be kind to yourself x

KittyandTeal · 31/03/2016 09:58

That's tough. I found I ran an pure adrenaline for a good few days.

Get through the day hour by hour. I found I crashed after the birth and slept really well. I'd found carrying a baby with a trisomy incredibly draining and so it took me a good while to recover physically. I think I realised that even more after my pregnancy with ds.

My gp offered me sleeping tablets after dd2. In the end I didn't need them but that an option as well if you carry on not being able to sleep.

Original poster
bayswatersophie · 31/03/2016 10:07

Yes good idea. I think I need a night or two of uninterrupted sleep and I'm too wound up to be able to. I'll ask for some help tomorrow. Draining is the word....

OP posts:
KittyandTeal · 31/03/2016 10:25

Yes it is draining. At the moment you have the physical and mental drain. In a few weeks you will have recovered from the physical part and it will 'just' be the mental and emotional parts. I think from the first issue being picked up until the birth is the hardest, most draining, full on part. I'm not saying afterwards is smooth sailing but you almost have just the grieving to focus on so it is a little less full on.

AliBingo · 01/04/2016 09:53

Just checking in to say I'm thinking of you OP. Hope you managed to get a bit of sleep. Not too much longer to wait now, the waiting is so shit.

BustingOut · 01/04/2016 11:14

Just to say still thinking of you, your DPand your girls x

HandbagHelper · 01/04/2016 13:56

Also thinking of you -really sorry you are having to go through this OP

KittyandTeal · 01/04/2016 15:53

Thinking of you today. I hope it is as easy and peaceful as possible.

💐

PixieChops · 01/04/2016 16:03

I've just read your thread for the first time, I'm so sorry you're going through this, hope it goes as peaceful as possible Thanks

Original poster
bayswatersophie · 02/04/2016 08:59

Thank you all for your kind messages yesterday. It was good to know you were with me. It was beyond gruelling, 15 hours, and I reacted badly to the medication so was very feverish. But they were all very kind and helped me sleep afterwards. I saw her this morning, she looked beautiful and very peaceful. I feel so sad but at last able to grieve.

OP posts:
KittyandTeal · 02/04/2016 09:04

I had the same reaction to the medication. It's horrid, I had a temperature but was so cold it was untrue.

15 hours is a long time, I'm sorry you had to deal with that for so long. I'm glad you managed a sleep and that you got to spend some time with her. Have you decided to name her?

Somehow once the physical part is over it feels like you are more free to grieve.

Remember it will take a while to recover, I'm still recovering physically from delivering ds at 14 weeks. It took longer after dd2, trisomy pregnancies can really take it out of you.

Be kind to yourself 💐

BustingOut · 02/04/2016 09:06

I'm glad that she looked peaceful, I hope this brings you comfort. Was thinking about you yesterday and hoping you were getting lots of support. Like I said before it's hard to find the right words but I hope it brings you some peace to know that complete strangers in many different places around the world feel some of your pain x

Original poster
bayswatersophie · 02/04/2016 09:19

Thank you again so much, it does help to know so much that you were thinking of me. I have named her in my mind just for myself and they have given me photographs and hand and foot prints. I just want to go home and cuddle my two little girls now.

OP posts:
Penfold007 · 02/04/2016 09:57

I'm so sorry for your loss

KittyandTeal · 02/04/2016 12:11

Good, I'm glad you're doing things in your own way.

I remember that feeling of desperately wanting to get home to dd1 and never let her go.

I hope you get out quickly and get some big cuddles from those 2 girls

Original poster
bayswatersophie · 02/04/2016 18:49

They let me out at lunch time. Sooooo happy to be home. Lots of tears under the duvet but so much better here than in hospital.

OP posts:
AliBingo · 02/04/2016 19:17

So glad you're home, hope your DH is looking after you lots, well done for getting through it. That's the worst bit over and you can concentrate on grieving now without the termination looming over you, that's how it worked for me anyway. Try and take it easy for a week orctwo as I imagine you'll be feeling pretty fragile, I know I was. My daughter helped get me through, I don't know what I would have done without her, I was so grateful to have her. x

KittyandTeal · 02/04/2016 19:19

I'm glad you finally got home. A good nights sleep in your own bed will make you feel a bit more human too. I remember being utterly exhausted.

I sometimes look back and think how did I do that with dd1 then look after a newborn but I guess the emotional hangover isn't the same.

Have they given you antibiotics? They did for me twice, apparently standard at my hospital, but they made me feel pretty grim for a week. Probiotic tablets sorted me out afterwards.

Freezingwinter · 02/04/2016 19:25

I disn't want to read and run, I just wanted to tell you I am thinking of you and your family Flowers

Original poster
bayswatersophie · 03/04/2016 08:42

Yes absolutely exhausted. I tried to go for a little walk yesterday to pick up my prescription but it was a mistake as I was too weak. My husband is making me stay in bed today and is looking after me well, grateful. Yes Kitty, they pumped me with extra strong antibiotics via a drip after the fun finale of the uterine sweep to get rid of final pieces of the placenta (just when you think the whole thing can't possibly get worse, right?) but so far no bad effects. Will bear in mind probiotics though, thank you. The girls are in their bedroom next door playing Frozen dress up and the sounds of normality are really comforting

OP posts:
KittyandTeal · 03/04/2016 08:47

I remember doing similar things. A week on I tried taking dd1 to soft okay and meeting friends from my baby group who all had new second babies. I look back and laugh now thinking what the hell was I thinking!

A few days in bed sound like a really good plan.

headinhands · 03/04/2016 08:59

Op I just read through the whole thread. So sorry you had to go through this, am in awe of how strong you're being and you DH sounds ace too. Wishing you all well Thanks

AliBingo · 05/04/2016 22:39

Hi op just checking in, wondering how you're doing x

KittyandTeal · 06/04/2016 08:00

💐 one day at a time x

Original poster
bayswatersophie · 06/04/2016 08:14

Thanks ladies. So nice of you to check in. I really really appreciate it. I'm ok... Physically was not in great shape for the first couple of days after. Very weak so I am taking it very slow at the moment and letting DH do everything. He is being great, lucky to have his unconditional support. Physically on the mend now. Emotionally very up and down. Most of the time I feel numb.... There are long stretches of time when I weirdly ´forget' what happened and I feel a freak for being ok and a fraud for being off work. Then a little thing happens and a wave of sadness hits me. Often triggered by insensitive comments from others. Most people have been great and the bad comments are well meaning but still make me rage and break down in tears. Some one suggested I get a puppy to replace my baby... OMG. I also find I have no patience, even with my precious girls, when they are in normal toddler whinging mode and that makes me feel like a rubbish Mum. Were you like this too in the early days after?

OP posts: