Baby Diagnosed with Edwards Syndrome

[tallla]

Hi All,

Following a high risk result from our initial NHS combined screening test for Downs/Edwards/Pataus syndromes, we opted for the NIPT test, which yesterday confirmed our baby had Edwards syndrome.

I'm still in the process of working through my emotions (I'm feeling totally crushed right now), and guess I will be for the next few weeks to come. DH and I spoke yesterday about what we'd like to do, and I know this isn't right for everyone but we're confident a termination is right for us. We've decided to have a medical termination, and I was hoping that someone might be able to give me any advice (if it's not too painful to discuss), or just information about what's to come, physically but maybe also emotionally?

I feel like this is maybe a lot to ask but I just feel like I need more information if anyone is able to help.

I've read lots of the resources on the ARC website and plan to give them a call soon.

Thank you xx

@incrediblehux have you received your NIPT results? Hope all is well

So sorry to hear the test confirmed what you suspected. Loads of love to you over the next few months (and years).
Bouledeneige it's lovely to hear what your midwife said. She's so right.

Sorry to hear this OP, and I would suggest getting signed off work for 2 weeks and then reassessing after that.

So sorry to hear your news OP. My heart is with you and your partner. Take as much time off as you need.
And get the advice of the midwives - and as much morphine as you need.

The midwife that said that to me was a very motherly older Jamaican woman ( I imagine someone who had had children herself and nursed many newborns into the world and maybe the sad ones like ours too). She hugged me as she said it and there was enormous comfort to me in her kind words and her big bosomed cuddle. It was 20 years ago - that's always stayed with me,

You will find people give you lots of kindness and care. It will mean a lot. And, just so you are warned, - some people who you feel close to and who genuinely feel very sorry for you, might stay silent because they don't know what to say to you. It will be noticeable and might hurt. But forgive them - they care but just don't have the words. Who does? It's very sad. Focus on how many people care and extend their love and warmth to you.

Lots of love and care to you.

@tallla you are welcome, of course.

I told my work that my baby seemed unwell and I needed time off while things were being checked out. Then I told them my baby had died. All true, but I wanted to control who knew it was a tfmr.

I ended up off for about 6 weeks, I think. Probably not long enough..My GP told me to take as long as I wanted and put "miscarriage" on my sick notes. My boss was very supportive and didn't pressurised me - that really helped.

Hi @tallla

I'm so sorry to hear your this, and wishing you lots of strength.
My baby boy was diagnosed with a chromosome abnormality Oct 18 through combined screening and CVS, we also decided to let him go at 14 weeks.
I opted for medical management, a very personal choice, and there is absolutely no right or wrong way of dealing with such an awful time. I chose to see my son after I delivered him, my partner did not, and although I took photos, my partner still hasn't chosen to see him over a year on - and I feel that is ok and his choice. He finds it hard in his own way and I accept that we are emotionally different.

The lead up to delivery was very distressing, but somehow my mind just clicked during the procedure and it was quite peaceful in the end. Baby was handed over to me in a quiet room, in a tiny Moses basket provided by the ward, and had a blanket etc. I did take my own bits for him too, like his little teddy and own blanket, which I had a square cut off to keep with him, and I have kept the rest of it in his memory box. We then decided on a private burial near home, and also named him. It gives me somewhere to go and see him, I guess I can still take care of him even though he physically isn't with me. I think I took the whole ordeal very hard, as he was my first child which took us 3.5yrs to conceive. I still struggle from time to time.

I had 6 weeks off work, I felt I needed longer, but my sick leave ran out and couldn't afford any more time off. My job didn't help in the fact that it was focused on disabled young people and adults. My partner had four weeks off but equally struggled as much.
My sick note stated "pregnancy complications" which annoyed me, as to me it was a bereavement and should've been treated that way. Everyone was really supportive once they knew though, fortunately. If you can, take as long as you need to in order to cope.

I didn't talk to my immediately family during the lead up to medical management or for two weeks after. This was because I could not cope with them being as emotionally distraught as me, but everyone's families are different so I hope you have lots of good support around you.

Recently the first anniversary passed and I coped quite well really, ups and downs throughout the year, varying emotions and sadness, but I don't feel any regret as I knew my son would be bound to a lifetime of pain and struggle, and I was terrified that given our fertility issues, he would likely not have had any siblings and no one would be around to make sure he was okay when we were no longer on this earth, or worse, he quite likely would've died quite early on in life.

Sorry for rambling.. You must do what you feel is right for you, ultimately. Everyone's choices are different and as I say, there is no wrong or right way. Most importantly, take good care of yourselves during this really sad time. Lots of love to you.

tallla I'm expecting my NIPT results tomorrow, and more likely than not they will show Downs. I can totally understand why you're making your choice but we will continue the pregnancy whatever. I really hope you get through the next few days ok and that in time you find the pain lessens.

@tallla really sorry for what you are going through, it really is horrendous. How many weeks are you now? I was 13. 5 weeks when I was induced and it took 4 lots of pills. My first set were taken about 10 am and the contractions came about 3am.

I didn't want to see the fetus, I just didn't want the memory and I felt 13. 5 weeka was just to early. The nurse came, she was lovely, and she snipped the placenta and took the fetus away. I was given an injection so the placenta would come away, unfortunately it didn't and then after about 18 hours of bleeding I was finally taken into theatre to have the placenta removed. It was awful, but when it was over I was able to start recovery. I am sorry if this is tmi. If you want to pm me, please do. I am also pregnant again (currently 23 weeks and fingers crossed all goes well) , I never believed it would happen again. I had another loss on the way to getting pregnant again, but it seems a miracle has happened. Sending my thoughts to you x

@tallla I had three weeks off from my scan and the cvs and then two weeks after termination.

Thank you so much everyone for sharing your experiences and for your support, I appreciate it so much.

@SylvanianFrenemies and @GandTisgoodforme I know what you mean in terms of what is written on the doctors/sick note. I'm struggling with how to tell people (particularly those at work who knew I was pregnant) what's happened. I will call for a sick note on Monday and I guess I will just leave it to the GP as to what they write (but I don't agree with miscarriage). P.S. @GandTisgoodforme you weren't rambling at all, thank you.

@Rubyroost thank you for sharing your story, I'm sorry you had to go through that. It's not tmi though, I really appreciate it as I feel like I need to understand what might happen next week. Congratulations on your impending arrival!

@incrediblehux how did you get on with the test results?

Does anyone have any advice as to what to take to hospital with me? I guess comfortable clothes and sanitary towels, pyjamas. Anything else that would be really useful that I'm forgetting?

Originally I had asked the doctor to write "pregnancy loss" - maybe that would be a better fit? For the note before and around the termination it said "pregnancy complications" .

For hospital, maybe a few snacks and your phone or tablet and charger. I found I needed to distract myself. Also shampoo and shower gel. Toothbrush and toothpaste in case you need to stay.

The midwife took.some photos and printed them/gave us a memory card. You might want to have some way of taking photos. I've never looked at ours but find it comforting to know they exist.

I also left a photo of my daughters and something my mum had made for him with the baby. Again, that way of grieving worked for us, it's not for everyone.

Some things to take for when you are in hospital:

Quality snacks and treats.

Laptop to watch tv as a distraction. I can't say I watched anything but it helped my husband.

Phone charger.

Blanket for the baby if you wanted to spend time with the little one.

Things to consider ahead of time:

Do you and your husband want to see and hold the baby. It's ok to make different decisions and to change your mind. My husband didn't want to see the baby but when the time came he actually held her.

The midwife/nurse may use the term foetus or baby. Be sure to tell them which you are comfortable with. Our nurse used foetus and it really upset me.

You maybe asked about hand and footprints but if the baby is too small and fragile this might not be possible so prepare for that.

You may be offered a memory box. Unfortunately we were given ours a week after the birth and many of the items in it were then obsolete to us as the baby had gone, like the teddies and blanket and a memory card for a camera.
In our hospital the camera was broken so if you want photos have a back up plan.

On a personal note, I took in a blanket that I held the baby in. I've kept this and when times are hard it's given me great comfort to hold it knowing my baby was in there once.

Also I'm presuming from your NIPT test that you know the sex of the baby but if you don't (like we didn't) you can have a chromosome test done

It's interesting @avocadoincident I used the term fetus and so did the nurses and I preferred it that way. For me and my psychological healing, I just needed to distance myself. I guess it was self preservation. Some women like to see baby wrapped up in a blanket, and some want it whisking away. There's no right or wrong way and you just need to think about what is going to be right for you. If my baby had been older than 13.5 weeks then I definitely would have rethought the process.

In terms of sick note, I got mine from consuktant. She asked if I wanted miscarriage it termination and I said the latter. My work knew it was a medical termination anyway. My second note for the next week just said post op. As I had d and c to remove placenta.

I agree @Rubyroost it's a very personal decision.

@tallla thanks for asking. My baby almost certainly has Down's Syndrome. We're continuing so will find out more about his or her health in the days and weeks to come.

I hope this process goes as well as it possibly could for you. These aren't decisions that anyone wants to have to make

Hi everyone, I took the first tablet at the hospital this afternoon to start reducing my hormone levels, and we found out that our baby is a girl. This has added a new perspective on the loss for me, and I'm just so so sad. It's so hard as from the outside, there seems to be nothing wrong - just a growing bump.

I just wanted to say that I've reread all of your messages as I've been struggling tonight and they've been really comforting, so thank you all again xx

@tallla I didn't find out until my geneticist appt the sex, that was 6 weeks after my termination. It brought it all back and made it all the more raw, I think it just adds another personal dimension to it. Thinking of you x

It's so much more real when you know the sex. But you are saving her from a life of suffering and operations and medical procedures. It's very brave and selfless of you.

We lost a girl too but we didn't find out until two weeks later.

My friend is going though the same as you right now. You are never alone in this.

How are you coping?

thinking of you tallla

Hope you are ok.

We had a very similar experience when we had TFMR back in 2012. We were struggling to have second child and I was devastated.

But we did go on to have a healthy baby soon afterwards. She's now 6 and I am absolutely convinced she was destined to be here and we just had to wait for her.

Don't give up hope yet. Just allow yourself to heal. No expectations of yourself. You'll feel ok then it'll hit you unexpectedly. Be gentle on yourself.

Our sons ashes are under a rose in the garden and I think of him often but know we made the right choice, bearing in mind his conditions he wouldn't have survived.

Hi tallla how are you doing? X

Wishing you lots of strength and support @tallla

My baby was diagnosed with Edwards via CVS diagnostics about 5 weeks ago now following high risk blood screening. What I would say is I was warned with Edwards and Pataus that blood screening is less reliable.

I’m still in limbo presently as was accepting the diagnosis and grieving (also a baby girl) when I was told my placenta has a rare condition called mosaicism. I’m now awaiting further test results (nature has conspired against us it seems) and have been in this limbo for 7 weeks all together now. It is torture and I feel your grief and pain.

Sending much love your way xxx