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Find support and share your experiences on our Miscarriage forum.

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Find support and share your experiences on our Miscarriage forum.

Miscarriage/pregnancy loss

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.

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InternetFOREVER · 03/02/2015 21:16

I'm so sorry for everything you've been through. It's so unfair that you had to make that decision (even though it wasn't really a decision as such, as there was no option to ultimately have a different outcome)... myself and a friend both lost babies at the same time, mine through a MC and hers through a medical termination, and I think it was more traumatic for her. But the way I'd look at it is that you didn't choose to end her life (because that choice was essentially taken away from you) but you chose to end her suffering, which is the bravest and kindest decision you could make.

With the time off work, I went back far too soon to a similarly stressful job after my first MC, and ended up off for months with stress/ depression (which isn't protected in the same way as time off straight after a MC). With later ones I've taken much more time off and gone back when I was ready. It doesn't do anyone any favours to rush it... my MCs were all first trimester and I still needed 1-3 months to be able to function normally. Again with me it wasn't so much pressure from work but pressure I put on myself by worrying what people were thinking/ feeling I "should" be ready, when I wasn't.

madwomanacrosstheroad · 03/02/2015 21:22

I know it sounds impossible now but it will change with time. My last baby was stillborn with downs syndrome at 21 weeks nearly 4 years ago. I had no idea.
At the time I thought I was going insane with grief.
It got a bit easier after my due date - at least I did not feel mentally pregnant anymore. The first anniversary was tough.
Since then it has started to be okay in a strange way. It is sad, will always be sad but that's it, it is not consuming me anymore.
Dont go back to work too soon. You will know when the time is ready bit as a teacher you need to function. It helps to talk. I had not realised until it happens to me how many women loose babies around that 20 week mark. I had thought at that stage my main worry was to find a good double buggy. Did you go to sands?

KittyandTeal · 04/02/2015 08:28

Thank you both. It nice to hear from lots of people further along than me. You are also talking so much sense into me and keeping me a bit more grounded, thank you!

We've had indirect support from sands in that the suite I delivered in is funded by sands as is the memory box the hospital gave us. We are also scattering roses ashes in a sands baby garden. I have had a look at the forum but atm other peoples stories are just too heartbreakingly close to our, which is odd, normally I find that comforting.

My friend runs a sands group locally so I may well go along to that in a month or so.

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madwomanacrosstheroad · 04/02/2015 21:01

One other thing I found helpful was to get a little locket and put my baby's photo in it. I wore it constantly until this spring/summer when I suddenly knew I didn't have to wear it at all times anymore. Also, hard as it sound if you have a friend with a baby. Handling a baby will make you cry but it helps. I have been able to visit a friend n hospital after she gave birth and handle her newborn without disintegrating and I did not think I'd ever be able to do that.

KittyandTeal · 05/02/2015 08:38

That's a good idea. I'm not sure I have a photo small enough for a locket. I do have a few photos on my phone that I carry around with me, so I feel like she's with me.

Some of our best friends (they live quite far away now) had their first dd the day we went for the termination. They're not close enough for us to see them but we've been in contact giving them advice as were the only friends they have who have a baby.

I also work with a friend who is due 10 days before I was. I think that's going to be pretty tough, probably on both of us.

I had an odd dream the other night that one of my friends had twins for her second and I was begging her to have one of the babies. That's pretty weird and messed up!

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HumphreyCobbler · 05/02/2015 09:06

Gosh that is a stressful dream to have. You poor thing.

I have a photo of my son out by my bed. I took it with me to hospital when I went into labour with my second child. I have found it a great comfort over the years.

KittyandTeal · 05/02/2015 14:35

I was thinking about a photo by my bed but I think my dd1 would ask lots of questions that I'm not sure I could explain to her now.

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HumphreyCobbler · 05/02/2015 16:02

photos on your phone sound just right Kitty. Strangely my dc have never asked about the photo, I think they just think that it is a photo of one of them.

KittyandTeal · 05/02/2015 16:17

I do plan on telling her when she's older. I think that's some more advice I might get from sands.

I can't find any age appropriate explanation for her. I have been tempted to say something like 'mummy was growing a baby but the baby was very poorly and died' I just think if this is the 'line' then as she gets older she'll worry about the next time I'm pregnant or when someone is poorly.

At the moment she knows something's not right. She sees me crying (not sobbing) and sad. We just say 'mummy's crying because she's sad but it's not your fault' she's not got to the point that she repeats that when she sees me upset.

I've been to the doc today about my headaches, I've had an almost permanent headache since we had the first scan that picked up a problem. Just can't shift it and I know it's tension. She's given me beta blockers for it which is great, she also said I will need counselling at some point and to come back when I'm ready and they'll sort it for me. I know I will need to talk to someone (I've done lots of talk therapy before for other issues) but in not sure I can put anything into words yet!

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madwomanacrosstheroad · 05/02/2015 18:23

When our baby died my youngest two children were 15 months and five years old. I basically explained that something along the line that for a baby to grow in mummys tummy is a very complicated process and sometimes things go wrong and a baby is poorly and too small to live outside the tummy. My five year old had been freaked out by overhearing I had lost a baby and also did not realise that not only old people can die. She was okay and we have expanded re genetics etc as she got older. my youngest DD was too young to understand at the time but has grown up with the narrative. I think it was actually harder for the older children who had more of a concept of my pregnancy. DD1 was 10 and did not cope well. She still sometimes gets angry. DS2 was 11 and went through a phase of refusing to go to school as he did not want to leave me. DS1 was 18 and was in hospital with us. He was sad but okay.

HumphreyCobbler · 05/02/2015 19:10

I will tell my children about their older brother one day, I think my ds has some perspective now and would deal with it ok.

KittyandTeal · 05/02/2015 19:53

It's so hard to find the right way of explaining it. Even lots of my adult friends don't fully understand when I explain about the third chromosome.

I'm not sure when she'll be able to fully understand but I don't want it to be a suddenly hearing about it situation.

I like the idea of examining that growing a baby is complicated. One of the children I teach told me her pregnant mum had had their baby too early and the baby was too little to live yet. She seemed to understand that at 7yo. I guess kids just accept these things as part of life if they're introduced and talked about in the right way.

I really don't feel right keeping Rose a 'secret' from my dd, it feels like she should know she had a little sister who was too poorly to love. Apart from anything she was and is an important part of our life and family.

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madwomanacrosstheroad · 05/02/2015 20:22

I would tell her. First of all she will sense that you are upset and that something scary has happened. If you don't tell her it will grow into a massive issue for her and she may attribute it to her. If you give her very basic info she LL be fine. If you have a photo somewhere she LL ask over time and you can add to it. It will be knowledge she has always had rather than this scary secret.. Children usually cope quite well with matter of fact things. I think for kids it gets scary when the terms that gloss over it like "went to sleep" "lost" etc are used.

Flower29 · 05/02/2015 20:32

kitty so sorry you lost your baby girl. You may not feel it at the moment but you should be proud that you had the strength to do the right thing by your daughter. Take care x

KittyandTeal · 06/02/2015 09:36

I think you're right madwoman. I think I need to get the language straight in my head first.

I know it's much better to be straight with kids and use words like 'died' or 'dead'. Oddly adults seem to shy away from those words, they use words like lost and sleeping angel etc. I guess on top of everything I'm trying to talk about Rose in straight terms and people seem shocked when I say she died or was stillborn (I know strictly speaking she was a 'late miscarriage' bit not in my head) People also desperately try to find different words when talking about the termination injection, or avoid it al all.

I think I needed to speak to a professional first and get it all straight in my head before I try and explain it to dd.

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madwomanacrosstheroad · 06/02/2015 10:42

I think the important thing is that you are comfortable and can cope with the terminology so it rings true for your daughter. I do not use the term late miscarriage even though I know technically it is. Also I would maybe not introduce the technicality of the termination until DD is old enough to understand the concept of women's right to choose. Did she have an awareness of your pregnancy? If she was told she was going to get a baby, she LL meed an explanation as to that now she is not and some reassurance that while rose was to unwell and little, she was a big strong healthy baby and it will not happen to her. At 2.4 they process and remember quite a lot.

KittyandTeal · 06/02/2015 12:29

No she had no awareness that there was a baby on the way. We didn't tell her. Oddly enough there was something in me that kept telling me not to tell her.

I'm not a big 'woo' believer but I think I had a gut feeling something wasn't right somehow. I kept saying to my DH 'we'll tell her after the next scan' then after that it was the next scan etc. so she never got told.

She knew something was up, mummy was always tired and a bit sore, I couldn't carry her anymore and she couldn't climb on my tummy. Then she had a sleep over at Nanas, I was poorly then very sad. It's all been a bit of a mess for her. I don't think we dealt with her very well, our focus was on getting through it all and making decisions.

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madwomanacrosstheroad · 06/02/2015 14:32

That is normal. I know it took me a while to even register that my then five year old had got the completely wrong end of the stick. She had overheard that I had "lost" the baby, knew I had been in hospital and then was constantly crying. She thought the baby was (alive) in hospital but had somehow been mislaid and we could not be bothered to make efforts to find him. The gut feeling that something is not right is something I had as well. Only I had naively assumed as I was so far on the baby would live.
I would still give her an explanation for your sadness.

KittyandTeal · 06/02/2015 15:30

I will next time she mentions it. She's not a big 'listener' (being 2!).

Sometimes she asks 'what's wrong mummy?' So I'll say next time she asks.

I contacted the doc today about counselling, she is calling back next thurs when she's next in.

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madwomanacrosstheroad · 07/02/2015 23:47

It does take time and you will be okay. It has only been a couple of weeks ago and you are not only experiencing intense grief but complicated grief. On the positive side you are talking and reflecting about it and are working hard on being emotionally available for your little daughter. It is just an utterly shitty and sad experience.

KittyandTeal · 08/02/2015 08:17

Thank you madwoman.

It's hard to know what the 'right' thing to do is.

I don't think I can fully explain to anyone who hasn't been through it just how painful it all is, and complicated.

I'm feeling a bit stuck as to what comes next. For a few weeks we had lots of messages, cards, flowers, people visiting etc. DH was off work. Now things are getting back to normal, messages have slowed, DH back to work, dd back to all her normal groups etc. Except it hasn't gone back to normal, everything has changed and I feel lost as to know where I for anymore

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