Support needed - termination at 20 weeks due to abnormalities

(33 Posts)
izzytwobells Wed 06-Jan-16 17:35:04

Hello,
My husband and I are 20 weeks pregnant with our first baby. The 12 weeks scan was normal and I've had a good pregnancy. Today we had the 20 week scan and we found out that our baby girl has abnormalities in her brain and heart. The Dr said she wouldn't survive much longer, so we have had to terminate the pregnancy. I've taken the first tablet and then I'm getting this done at hospital on Friday. We feel so lost, helpless and devastated.

My Mum also has just been diagnosed with cancer and lives in Australia, I've just returned from visiting her and we spent so much time baby shopping and getting ready for the arrival. It all feels like a nightmare.

I just don't know how we are going to get through this time. We want to try for another baby when we feel able to, but I'm so scared this will happen again. The Dr said its highly likely that this is not an inherited condition but we have to wait 8 weeks to find out what happened to our baby.
I've never posted on here before, but I would be grateful for any advice from people who have been through similar situations. How are we supposed to go back to normal life, work etc, when this has happened? It all feels like a horrible dream. Thank you for reading.

CuppaTeaAndAJammieDodger Wed 06-Jan-16 17:38:35

I have absolutely no experience I'm afraid (lost a baby but much earlier) but just wanted to say that I'm so sorry for the loss of your little girl and am sending you strength flowers

izzytwobells Wed 06-Jan-16 17:54:41

Thank you so much for your kind words, and I'm sorry for your loss too. X

Snoopysimaginaryfriend Wed 06-Jan-16 18:00:04

izzy I've had three losses, all before twelve weeks and I can't imagine how you must be feeling.
Each time I was desperate to be pregnant again so I understand your desire. Take your time to grieve properly and be kind to yourself and husband.

Freeriver Wed 06-Jan-16 18:06:07

I have no experience of this myself, but I do feel your pain and you and your hubby must be devastated.

If it isn't an inherited condition future pregnancies will be normal hopefully.

I have nothing to offer but thoughts and love to you both at this time.

KittyandTeal Wed 06-Jan-16 18:12:23

Izzy I'm so sorry you are going through this.

We lost dd2 almost a year ago now at 22 weeks after her being diagnosed with T18 following abnormalities found at our 20 week scan.

It is an awful time. I am happy to answer any specific questions you have. It sounds like you didn't need the additional injection part of the termination which is good (think that's after 21 weeks)

Some things you might want to think about are if you see your baby after she has been born. You might want to take something with you to leave with her when you are discharged.

The hospital chaplain organised our dds cremation and did the service even though both of us are atheists. This might be something to ask about too. Our dd was measuring 19 weeks when she was born and we were lucky enough to get ashes back so we were able to scatter them and have a spot to go to. It does help.

In terms of labour I would take whatever you are given. My dd1 was a normal birth and she was 8.6lbs, I had g&a and pethadine and was fine. With dd2 the labour was much shorter but more intense. I had a pda with morphine which really helped, you can also have an epidural if you want one.

Sands and arc are both wonderful charities that can help.

flowers

Loki17 Wed 06-Jan-16 18:39:28

I'm so sorry for your loss. I've no words of advice but wish you all of the support in the world. Saying Goodbye is a very good charity to contact xx

Claraoswald36 Wed 06-Jan-16 18:41:11

So so sorry op. Be gentle with yourselves but don't lose hope xx

izzytwobells Wed 06-Jan-16 19:44:15

Thank you all for your messages of support, we really appreciate it. This is opening my eyes to how often people go through this, and that makes me so sad.
**Kittyandteal thank you for the detailed information, it is so helpful to read. Your advice is excellent. I don't think we can see the baby, but paying tribute to her and scattering her ashes is something we would like to do.
I will look into the charities you mention too. I just wish this wasn't happening. I guess I have to take some comfort in the fact that I can get pregnant, and hopefully our next baby will be healthy and happy. Do you get more frequent scans for subsequent pregnancies following a loss?

spilttheteaagain Wed 06-Jan-16 19:50:48

Oh Izzy my lovely what a heartbreaking thing to happen, I am so very very sorry.

I lost my DD1 at 20 weeks, no heartbeat found at 20 week scan, we later found out she'd died due to toxoplasmosis infection and I was induced and delivered her.

I have just lost my third baby, I had a TFMR at 13+ weeks due to a lethal diagnosis of acrania/anencephaly which is incompatible with life, and also had a medical management delivery, so I've sort of come at this from both angles.

I'm happy to answer any questions you have about any of the process, feel free to PM if you don't want to post on the public forum.

Don't worry about getting back to normal life for now, just take each day, each hour as it comes. Like kitty my labour at 20 weeks was surprisingly intense and I had the intramuscular morphine shot too.

For now I would recommend giving some thought to the delivery and immediately afterwards - consider if you would like to see your baby, or take photos (charge cameras etc). My hospital had memory boxes that they gave out which was wonderful as these had little blankets, teddies etc so we had something to wrap our baby in (she was too little for clothes, her growth had been affected by the infection) and a teddy to send with her to the mortuary and a duplicate one to take home for us. The hospital will likely offer to do hand and foot prints and often photos for you which you can obviously take and look at straight away, later or never, as feels right to you.
There will be a chaplain attached to the hospital and you can opt to have them visit to bless the baby which can be a nice way to recognise your little person. You can also arrange to have any other friend/family member/faith representative come in to meet or pray for your baby if that would comfort you.

Medically, I expect you've had the oral tablet to prepare the cervix etc? The next step in both of my losses was 48 hours later, and pessaries inserted (you can do this yourself or they can do it for you) to start your labour. My 20 week missed miscarriage, the labour began quite soon after, I had about 1.5 hours of gentle period pain and then the contractions ramped up very strongly pretty fast. They lasted an hour or two and then I had a sudden whoosh of waters but they were mixed with blood - it looked worse than it was. Then the pain stopped totally, 20 mins passed and I just pretty much felt DD1 fall out, there was no pushing involved, just a little nudge. After a few minutes they gave a syntometrine injection in my bum to make the placenta come away, and after about 5 mins another little push and that came out.
With these early deliveries there is a risk that the placenta does not come away, or only partially. If this happens you will need help, sometimes a D&C I believe. This didn't happen to me so I can't explain much about it, but I was glad I was aware it was a possibility.

With my 13 week TFMR I had the pessaries and then had to have oral doses of the same medication every 3 hours until I delivered the baby. For whatever reason, it took a long time to get started - I had pessaries at about 11.30am, but didn't progress beyond periody pain until about 7pm which was very frustrating. But then it got stronger, a hot water bottle and firm back rubbing by DH really helped and after about 20/30 mins I felt a weird twang inside and the pain vanished. Baby slid out about 10 mins later. Placenta followed again after syntometrine, mercifully intact.

After the 20 week delivery my milk came in about 3 days later, and this became physically very uncomfortable (engorgement). There is medication you can request to suppress milk if you would prefer to avoid this. Ask them in hospital.

I would also recommend asking the doctor in hospital to do you a sick note for at least 2 weeks if you are working. You'll be able to then see your GP about extensions to that and fit notes to do a phased return etc in due course if you want to do that. I personally had 6 weeks signed off sick and then a phased return. It wasn't long enough for me, I was mentally very fragile, but felt worried about the sick leave so tried to go back. Don't rush it. Your healing and mental health is more important, take your time.

I wish so much you weren;t in this nightmare. It was the very darkest time of my life and has affected me profoundly and permanently. You may well be in a very deep state of shock right now, especially with all the physical side of it before you. Grab any support you can, and don't be afraid to get in touch with your hospital's bereavement midwife in the days and weeks and months to come. They are there for the long haul. I'll be thinking of you and your little one. I hope physically it is straightforward. I'm so sorry you find yourself here xx

RoTo72 Wed 06-Jan-16 19:54:22

So sorry to hear this, absolutely heartbreaking for you. I have no advice as I had a missed miscarriage forced out at 11 weeks. Just couldn't read and not comment xx

spilttheteaagain Wed 06-Jan-16 20:02:06

Yes you should be consultant led and get extra reassurance scans next time. I had extra scans in my subsequent, successful pregnancy at 16, 28 and 36 weeks, in addition to the 12 and 20 week scans. The 20 week scan was done by a fetal medicine consultant. You should get the chance to discuss in broad terms a plan of care for future pregnancies at the appointment in approx 8 weeks time to go over the results of testing from this pregnancy.

izzytwobells Wed 06-Jan-16 20:15:40

Thank you all for the information and advice. I'm so sorry for your losses too.
As you say, we will just have to take our time to heal and come to terms with this. I just can't process it.
Seeing my husband so upset has been the hardest thing. I hope we can conceive a healthy baby in the future. Xx

islander99 Wed 06-Jan-16 20:37:05

So sorry that you are in this situation. Although my experience isn't exactly the same, I know all too well how shocking it is to go from making plans for a baby, to receiving the worse news there is. I have had two late miscarriages within a year, most recently at 21 weeks in early December. Both times I had to deliver the baby after being induced.

Other posters have given excellent advice. I would concur that you should accept good pain relief. This time I had an epidural. In March, I had a morphine pump. Having to deliver is an awful prospect. Try to focus on the medical stuff for now. You can mourn your baby properly after.

Having been encouraged by posters here, I attended my first SANDs meeting this week and found it incredibly supportive (after dreading the prospect.) It was good to meet other people who understood the extent of your loss at different stages of grieving, so I recommend it.

Please feel the support of lots of strangers online. I felt so alone before I posted, and you really aren't. Lots of love and strength for the next days xxx

P1nkP0ppy Wed 06-Jan-16 20:43:53

Very sorry and sad to hear op, just wanted to say my thoughts are with you.
((Hugs)) x

izzytwobells Wed 06-Jan-16 21:15:17

Thank you all.
islander99 I'm so sorry you have suffered two late miscarriages, that breaks my heart. Thank you for your advice. I will seek out support from sands as you suggest, and I'm already feeling much less alone after reading all of these posts. Xxx

spilttheteaagain Thu 07-Jan-16 09:21:33

How are you this morning Izzy? I hope you and DH have managed to sleep.

izzytwobells Thu 07-Jan-16 09:53:48

Morning, that's so nice of you to ask. We slept for a couple of hours. I think we are both just dreading tomorrow so much. Thank you for your support xx

spilttheteaagain Thu 07-Jan-16 10:04:18

The unknown is scary I know. I hope it's easier than you fear. I found the day in hospital actually was somehow easier than the days before and after. Everyone knew why we were there and we were treated with so much kindness and consideration, and our baby with the utmost respect. I felt safe and cocooned in there, no need for brave faces or awkward conversations with people. It was going back into the world that was harder, where I wanted to scream in the supermarket WHY are you all carrying on like normal my baby is dead! I hope you can get some rest today, and that your midwives etc treat you well and gently tomorrow. If you have any last minute questions or worries do just ask, there;s a wealth of experience on here sadly. Will be thinking of you.

JoMalones Thu 07-Jan-16 16:02:41

I'm so sorry for your loss. I'm afraid I don't know any answers but my thoughts are with you thanks

KittyandTeal Thu 07-Jan-16 17:07:59

I hope tmrw is as gentle as it can be. Let them look after you, it's not a day to try and be brave.

In terms of next pregnancies you will get extra scans. I get 8, 10 and 12 at the fetal medicine centre, nhs 12, 16, 20 and then whenever I want (within reason) after that.

Livefortoday1 Fri 08-Jan-16 22:48:57

I am so sorry for your loss. I had to register and comment because I went through something very similar last August.
At 21 weeks we were told that our daughter had significant brain abnormalities which were not compatible with life. It was the darkest day of my life. The care from the hospital was exceptional. I held our daughter for hours after wards. It was the only thing I could do for her.
The hardest part which I am sure everyone will agree with was walking out of the hospital without my baby.
Allow yourself to grieve. Speak with the bereavement counsellor. Accept help from friends and family.
Nearly five months on I still can't believe what has happened. It is such a surreal experience but you will get through it. Keep strong xxx

Kjessop96 Fri 08-Jan-16 23:04:38

Very sorry for your experience,
Not easy going through this.
I've never been through it myself and would never have a abortion but I reckon things would be different if I had to terminate the pregnancy and it would be hard loosing your child I recently lost my baby on Christmas Day (25/12/2015) and the loss of my child nearly killed me I had so much internal bleeding that I'd stopped breathing and my heart stopped beating for a minute or so to the point my other half had to preform CPR on me until ambulance arrived 6 mins after and hasn't even hit me yet but think it will at his funeral on Tuesday 12th January. But I reckon I can atleast feel your pain even if it's in a different way. Always here for moral support, only just come onto this page but don't know how it works but If you can direct message I'm always here for support

Livefortoday1 Sat 09-Jan-16 11:47:59

Kjessop96 I'm very sorry for your loss. Sounds very raw. I am sure you will take great comfort from the funeral. I certainly did.
I don't think it's helpful or nice to say that you would never have an abortion on this particular thread. First of all I hate that word. As if I had a choice in all of this. I desperately wanted my daughter. It was never a choice. I was induced on medical grounds as she would not survive any longer. I'm sure you did not mean it like that but we are all in exactly the same position. We have lost much wanted babies and are all grieving. Best wishes to you xx

KittyandTeal Sat 09-Jan-16 11:53:18

Still thinking of you op.

I hope you're physically on the road to recovery, I know emotionally it's a very different story.

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