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Original poster

Edwards syndrome

121 replies

KittyandTeal · 19/01/2015 20:03

We found out today, after an agonising 5 days, that our baby girl has Edwards syndrome.

I am 22 weeks and booked in the the termination injection at kings tmrw morning. My local hospital will induce me on thurs.

I'm not quite sure why I'm writing this. Maybe to acknowledge it a bit more. We have wonderful support in friends and family and a beautiful 2yo dd.

It just feel so unfair. Tmrw I have to say goodbye to my baby. Can't get my head around it.

OP posts:
bakingtins · 19/01/2015 21:39

I'm so sorry kitty you must be heartbroken. Thinking of you as you face these very difficult days ahead. Flowers

BeggarsCantBeChoosers · 19/01/2015 21:57

I am so sorry for your heartbreak and grief.

I wonder if you have been presented with all of your options? I ask this because I had a friend who was told she had a baby with Edwards syndrome and felt she had no option but to terminate. After that stories came forward of babies being born and living for various times which was a grief to the parents but also in a strange way a joy.

It seems it was slightly touched on in this old mumsnet thread. Might be worth a read through.

www.mumsnet.com/Talk/pregnancy/a1161062-Edwards-syndrome-awaiting-mc

My heart truly goes out to you Thanks

Original poster
KittyandTeal · 20/01/2015 08:39

Thanks.

We are very aware of the prognosis. I know that each persons choice is different and I absolutely respect that. However, for us, spending months waiting for her to die or born in pain and last at most a year in pain, stopping breathing, suffering numerous heart attacks just isn't fair on anyone.

I believe that you become a parent the moment you realise you are carrying a baby. Part of being a parent is making responsible choices for your child. I would love for our little girl to be part of our lives however hard it is for us but that's not a fair choice for her.

I feel if I carried her to term we would be doing it for us because saying goodbye is too hard, because selfishly we want her for the little time she may survive. That's not a fair decision for her.

I know this decision is right, it's also the worst decision we've ever had to make.

OP posts:
munchkinmaster · 20/01/2015 08:42

I agree with your decision, both as it's your decision and because I think it's the choice I'd make.

Best wishes, allow yourself space to grieve, don't feel you need to justify this decision.

Original poster
KittyandTeal · 20/01/2015 08:47

Thank you munch.

I'm not even sure how to start grieving in this situation tbh

OP posts:
munchkinmaster · 20/01/2015 09:19

Neither do I. There is no right and wrong. Take your time.

seaoflove · 20/01/2015 09:23

I totally agree with your decision. I think it's a loving thing to do.

I'm really sorry you're having to go through this, and hope you are treated with all the care and compassion you could wish for.

Messygirl · 20/01/2015 09:24

This reply has been deleted

Message withdrawn at poster's request.

Original poster
KittyandTeal · 20/01/2015 13:52

Thank you all.

We've had the termination injection. It was much more painful than I'd assumed.

Atm I think I feel a sense of relief, what a horrid thing to feel. I think it's a relief that it's done, it's obviously been weighing on my mind much more than I had thought. I'm also relieved that she will never feel pain now. Poor thing.

The next step is induction on thurs.

OP posts:
Original poster
KittyandTeal · 20/01/2015 13:53

Madrigals I'm sorry for your loss. It may be different to our dd but no less painful I imagine.

OP posts:
Messygirl · 20/01/2015 18:52

This reply has been deleted

Message withdrawn at poster's request.

Original poster
KittyandTeal · 20/01/2015 19:14

Thank you. We are both very lucky, we have realised over the past week just how many wonderful people we have around us in RL.

I'm feeling surprisingly calm and non emotional atm. I'm pretty sure it's a coping strategy though and my brain has just shut down that bit for now.

OP posts:
cloudjumper · 20/01/2015 21:37

So sorry for your loss Flowers I hope you will find strength in the fact that you've made the right decision for yourself and for your baby. Give yourself time to grieve, hope that you will get lots of support from your hospital, too.
I had a miscarriage at 17 weeks last April, and they found that my baby also had Edward's. I did not have to make this awful decision at the time, but would have done the same thing as you.

Hope that you can get through Thursday ok (my advice - do not wait too long before asking for strong pain relief, no point adding to the suffering). All the best xx

Monten · 20/01/2015 21:46

kitty I'm so sorry you're going through this. I had a termination last year after my baby boy was diagnosed with edwards syndrome. It's a hateful, horrible disease. You have made the right decision, with courage and with love for your baby. She will be with you in your heart forever. I'm so sorry Flowers

thatsn0tmyname · 20/01/2015 21:48

Wishing you strength and support. Xx

SteptoeAndDaughter · 20/01/2015 21:49

So sorry for your loss OP. I'll be thinking of you.

Original poster
KittyandTeal · 21/01/2015 07:48

Thank you all. It's oddly good to know others have been in the same situation. It's horrid that you've all been through it but it makes me feel less alone I guess.

We're planning to take our dd (2.4yo) out today for a fun day. She's spent the best part of a week being dropped at Nanas only to have us come home late. The days that we've been here we've just been a wreck. It's not good for her.

So today it's dose up on painkillers (stomach is still surprisingly sore) paste in a smile and give her a nice day. It might be the last in a little while. Poor thing.

OP posts:
Monten · 21/01/2015 12:51

I know what you mean about being comforted about other people experiencing the same thing kitty. I was. Immeasurably. I was so frightened, it was my first pregancy and felt so alone after that first terrible scan. I came home and posted my first message on this site. I got so much support it was amazing. I've never left! In fact, am going to post a link to the thread if I can find it - some of the stories may help you. Hang on

Monten · 21/01/2015 12:56

Here's the link: www.mumsnet.com/Talk/antenatal_tests_choices/a1961107-Very-bad-news-at-12w-scan-any-experience-and-advice-welcome

I was 'lucky' that it was discovered at 12 wks so I could have a surgical termination. I hope some of the other advice is useful to you though Flowers

WowserBowser · 21/01/2015 13:02

I too had a termination a year ago for the same reason. I was not as far gone as you though.

I was worried about miscarriage - I had no idea about anything like Edwards syndrome so it was a bit of a shock. Thank god for MN!

My Ds helped me get through it.

Will be thinking of you.

Flowers
Original poster
KittyandTeal · 21/01/2015 18:12

Thanks.

I've hit a bit of a wall this afternoon. Felt ok this morning and had a lovely time with our dd.

Got home and am sore, uncomfortable with Brixton hicks or contractions, not sure, I'm aching all over from the tension yesterday and have had a major meltdown at the thought of leaving my baby at hospital and coming home alone.

I actually feel like I'm done, I've hit my limit both physically and emotionally.

Tomorrow I have to go to the delivery suite where I should have been going in may, I have to go through labour, have my dead baby, somehow say goodbye to her, leave the hospital without her and come home with my DH to try and get on with something like a normal life for the sake of our dd.

I actually don't think I can do it.

OP posts:
seaoflove · 21/01/2015 18:17

I don't know what to say. It's unthinkable, what you are having to do. If I were you I'd take all the pain relief available xxx

Pancakeflipper · 21/01/2015 18:21

Holding your hand.
You will do it, somehow strength appears and you get through it. I haven't a clue how, but strength and support comes from the most surprising places.

I hope you have a fantastic supportive medical team with you who can take some the anxiety away. I hope you get to spend time with your baby. And she will always be your second child and be part of your family

And remember SANDS. They will help.

Christelle2207 · 21/01/2015 18:29

Am so sorry. Holding your hand. I am 23 weeks and cannot imagine how hard this will be. I'm certain however that your dd will be of great comfort to you in the coming days. You are doing the best thing for all your family. x

HumphreyCobbler · 21/01/2015 18:34

I am so very sorry. I have been through exactly what you are going through, I had a baby with Patau's syndrome. I well remember feeling that I couldn't possibly be having to go through this Sad

You will get through it, one bit at a time. WIshing you strength to deal with the day ahead. Please feel free to PM me or ask any question on here.