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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....

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TheDisillusionedAnarchist · 22/03/2016 19:27

So sorry, yes happy to support whatever you choose. Take your time. Edwards syndrome family UK group on Facebook might feel supportive for you too. Over half the families chose to end their pregnancies and there is a lot of support whatever route

TheDisillusionedAnarchist · 22/03/2016 19:35

I can't find the direct link but it's linked on the trisomy 18 info on my blog www.rumersrainbow.co.uk and there are some stories from families who made all sorts of choices if you look for Darcie's page they chose to end their pregnancy after the T18 diagnosis.

These are such tough times, thinking of you.

bayswatersophie · 22/03/2016 20:18

Thanks so much for so kindly offering a shoulder both of you....Kitty, our decision was also made during the wait. I am also going to do a tfmr but it is a hard hard choice. It is right for us and our two children though. If you feel you can share and offer advice about what happens next I would be very grateful

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P1nkP0ppy · 22/03/2016 20:24

Thinking of you 💐 x

KittyandTeal · 22/03/2016 20:28

It's a tough decision and not an easy process.

How far along are you? I'm not sure if the process is different in France but I'm happy to share. The gestation makes a difference because if you're under 20 weeks there are bits that are not relevant to you.

TheDisillusionedAnarchist · 22/03/2016 20:41

Thinking of you. It takes much courage to make a decision that is best for you. I hope everything goes as smoothly as it can. I know Kitty can provide lots of information and support but just wanted to let you know I am thinking of you too.

bayswatersophie · 22/03/2016 20:50

I'm at 18 weeks French calculation which makes it 19 or 20 the English way of working it out I think. I' m seeing the consultant tomorrow to go through it all but she already said at this stage it is too late for a surgical termination. They are going to try to schedule it for early next week. I don't think I can continue in limbo like this for too long...
Thank you Disillusioned for your kind thoughts too xxx

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KittyandTeal · 22/03/2016 21:07

Yeah any time after about 16 weeks is too late for surgery.

Like I say I'm not sure if it's different in France. In the uk, if you are after 20 weeks you need to go to a specialist fetal medicine unit to have an injection to stop the baby's heart before delivery. It is kinder as sometimes they can survive birth at this gestation (this is how it was explained to me) I'm not sure if they do this in France.

Whatever gestation you are at the next bit it the same. They will give you a tablet to take which suppresses the pregnancy hormones and tarts getting your body ready for labour. It takes 48 hours to work, very occasionally it will work in less time but it generally doesn't in cases of terminations (I had the same with ds who had died over a week before and it still didn't kick off early)

After 48 hours you will go back into hospital to be induced. They will start it off with a pessary in the vagina (and an antibiotic one in your bum which surprised me!) then you will be given tablets orally every 3 hours. I had the pessary at 9am, I had 2 sets of tablets and dd2 was born at 4 pm.

You will be written up for any pain relief you want. I had codine, gas and air, oral morphine and in the end intravenous morphine on a button (can't remember what it's called). I used morphine and gas and air. The contractions can be pretty intense (it was the same with ds at 14 weeks but I didn't need morphine this time round) so don't feel you have to be brave about it.

In the uk you have an option to see and spend time with your baby. We were lucky, we named dd2, spent the night with her in a sands unit at the hospital. They dressed her and we took photos. The midwife took hand and foot prints and we have a memory box for her.

I'm not sure how much you know about T18. There are some physical features but they are not scary to see. Dd2 looked like a tiny normal sleeping baby. She had undeveloped ears, a smaller chin, locked arms at the shoulder and elbow and fingers that were crossed. I say this because the crossed fingers and possible 'rocker bottom' feet can effect the hand and foot prints, they can be a bit harder to get but our midwife was awesome and experienced at it. I've only fully noticed the effect when comparing them to ds prints that are much smaller but clearer.

If you have any other specific questions I'm more than happy to answer them. I've been entirely honest and factual, some of it is probably hard reading but I am the type of person who would rather know everything that will happen than be surprised on the day if that makes sense.

AliBingo · 22/03/2016 21:17

So sorry to hear your news.

I had a tfmr back in 2013. The hardest bit for me was the shock of the bad news and the heartache of knowing what our decision was and that there would be no baby.

I was petrified of the process itself but it really wasn't that bad at all for me physically (emotionally another story of course).

Not sure what sort of detail you want, happy to share on here or via pm. I was 16 weeks, I had to go in and take a tablet on the Thursday and then went in on Saturday for a pessary and then waited for labour to kick in.

I had a few cramps but nothing like proper labour and when it happened it was very sudden and quick, that was about 5pm and I went home that evening.

Physically all was fine straight after, bled for. a few weeks but not like after a term baby. Periods returned 5 or 6 weeks later.

You might want to think about whether you'll see or hold the baby etc, not sure how they do it in France.

So sorry, it's such a shitty hand to be dealt xx

AliBingo · 22/03/2016 21:20

Just to add, kitty has covered it really well, my experience was very similar apart from I only had codeine tablet for pain relief, for some reason I didn't get bad pains so you may be lucky.

KittyandTeal · 22/03/2016 21:22

Ali your tfmr sounds similar to my 14 week delivery although I needed gas and air as well as codeine so I think I may have a lower pain threshold than many people.

TheDisillusionedAnarchist · 22/03/2016 21:52

If you would like to see some pictures of T18 features, hands and feet, I have some both before and after death, I am very happy to share. We were unable to get hand prints after DD died due to the T18 crossed over fingers.

bayswatersophie · 22/03/2016 22:38

Thank you so much, that's what I needed, the facts. I really appreciate the detail as I can't deal with anymore horrible surprises at the moment. I think I will opt for all the pain relief I can get, I have no idea how I will cope with the emotional pain.... I just sat and kissed my two sleeping daughters (4 and 2) and remembered how blessed I am with them

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AliBingo · 22/03/2016 23:01

I just had DD at the time and she is what kept me going tbh.

I am a huge wimp and the actual termination wasn't as bad as I feared, fast too, should be reasonably so for you as well having had 2 babies already.

I have gone on to have two more babies and the pain of our loss has faded a little with time plus I just feel so blessed with the ones I do have.

By the way I didn't have my milk come in or anything although they warned me I might, but was only 16 weeks.

Oh there was a decision to be made about my baby's remains as well which came as a shock on the day.

If you think of any questions no matter how daft please ask x

sofato5miles · 23/03/2016 06:39

So sorry to read your news. You are on a very tough road and I wish you strength and love.

NationMcKinley · 23/03/2016 07:02

I'm so sorry. I have no wise words but I'm thinking of you. Be gentle on yourself Flowers

KittyandTeal · 23/03/2016 07:53

The emotional pain you take day by day, one step at a time.

There will be days you think you can't get through (yesterday for me) and days you feel absolutely fine and all sorts of days in between.

Again, it might be different in France but we were given a choice of private burial or cremation or for the hospital to organise the service and cremation and we could be involved. We chose for the hospital to organise it. We were lucky that they managed to get ashes back from her. We've been told it's very unlikely for ds as he was so tiny.

Write down all your questions for the consultant so you don't forget. Use this thread as a comparison if that helps and ask exactly what will happen.

bayswatersophie · 23/03/2016 17:36

Thanks again for being there. I really hope me leaning on you like this is not re opening old wounds. Your empathy and advice are so helpful in this bleak time. They told me today they will start the process next Weds with the birth on Friday. I don't know how I will get through these next days. I am trying now to work out how to explain to my girls why Mummy is sad and why they won't have a baby sister after all.

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KittyandTeal · 23/03/2016 17:50

Not at all. It helps me a bit, makes me think that at least something useful can come of my experience.

Telling kids is really tough. My dd1 was too young to understand when we lost dd2 and I tried hard to not show my upset, looking back that was the worst thing because what she actually got was mummy being tired, grumpy and bursting into tears and no reason. It effected her quite badly.

With ds she knew there was a baby coming. She's 3.5yo and I've explained that the baby isn't coming anymore, that his body wasn't working properly and was a bit broken and so he died. He came out of mummy's tummy but he was already dead so he couldn't come home. She has asked a lot of questions and what I've learnt is to use 'dead' and 'died' gone confused her and she was asking if he was coming back and if we had to find him and that say 'we don't know' is ok. I've used 'it's really hard to understand, mammy and daddy and the doctors don't understand either'. She's now more than happy to explain and accept that 'mummy's sad because the baby died'. She has asked about sil baby so I've had to explain that she will be fine and won't die.

Sands do a really good booklet about helping siblings, you can download it from their website.

You will get through it because, without being mean, you have to!

One foot in front of the other, feed the kids and be kind to yourself. That's all you can do at the beginning. It does get better though.

bayswatersophie · 23/03/2016 18:06

Thank you Kitty, it really is just one day at a time I guess. My husband is being great and strong for me when I feel weak. I guess a weird positive of this is a big reminder of why I love him. Thanks for the advice on telling kids, I hadn't thought about the fact that using euphemisms would confuse them

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KittyandTeal · 23/03/2016 18:10

I'm only regurgitating what I've read in the sands booklet and what my counsellor told me 😄

Yes, these things do make you realise how lucky we are. That's the strange flip side for me, it is utterly heartbreaking but I look at my dd and my dh and my friends and family and realise actually I am bloody lucky. I don't feel like that all the time but it's a good opposite to the raging, for stamping anger and sadness I feel soemtimes

bayswatersophie · 23/03/2016 20:18

Wise words....I am grateful for my family and friends too, and for the kindness of strangers xxx

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bayswatersophie · 30/03/2016 08:29

Today the whole sad process of the termination starts. I am going to the hospital this morning to take the drugs to start it all off. I have no idea where to find the strength to get through these next few days

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PenelopePitstops · 30/03/2016 08:33
Flowers
AliBingo · 30/03/2016 08:44

Hope it goes alright, will you have anyone with you? DH had to look after our baby girl while I was having mine. For me the wait was the worst bit in a strange way; it felt good to get on with the termination by the time it came to it. I was petrified but it wasn't too bad. I hope it goes nice and quick for you so you can get home and rest. xx