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devastated - may have to terminate. some questions

(25 Posts)
Cat98 Wed 06-Jul-11 10:09:35

At our routine dating scan they notived 9mm of fluid behind my baby's neck. Saw the specialist on monday and the fluid was around the head too, my baby has some problems with its bowel and also its limbs are not developing properly. We have opted for more tests but it is not looking hopeful. I wanted to ask - have you gone through a termination? I have been told i'd have to go through labour but I am only 12+4 and have read that a surgical op may still be possible? Did you hold your baby or name your baby? I know these are highly sensitive and personal questions but I am all over the place at the moment. Thank you.

Cat98 Wed 06-Jul-11 10:10:17

And what was it like? Is it as horrific as it sounds? Did you feel a lot of pain?

ghislaine Wed 06-Jul-11 10:41:48

Dear Cat, I'm so sorry for what you are going through. It is something no woman should ever have to face.

A lot depends on you, and what you feel is right for you and your circumstances. I was also 12+4 at my nuchal scan last year, where I got 1:2 odds for trisomy 21. Because I then had cvs (and a bank holiday intervened) I was 14+1 when I had my termination. I had a surgical termination, so it is still possible. I didn't feel any (physical) pain as a result and the recovery was quite quick. I think it depends on the skill and experience of the surgeon so it will depend on where you live what you might be offered. I have read also that in some places hospital trusts contract out late surgical terminations to organisations like BPAS or Marie Stopes. I did not want to go through birth but there are many women in your situation who have done that & did hold and name their babies. With a surgical termination, I don't think you will get to see your baby afterwards but of course you can name him or her. The hospital should also offer you some kind of funeral service if that's what you want.

There are threads just below this one for women who are facing or have gone through terminations for abnormalities. Ask us your questions, here or there, I found them a great source of help and comfort when I was plunged into confronting these dilemmas last year. Thinking of you.

cherrybug Wed 06-Jul-11 10:58:36

Cat - I'm so sorry to hear that you are going through this. It's a devastating and shocking time and my heart goes out to you.

I ended my last pregancy at 20 weeks as my baby girl had a very rare chromosomal problem with a very poor outlook. I gave birth to her, held her, named her, got hand and foot prints and photos and we had a funeral and cremation. I have her ashes at home and will scatter them when I feel the time is right. It was exactly right for us and the memories I have of her are very precious to me.

It's different for everyone. You are earlier in your pregnancy so may still be able to choose a surgical termination if it comes to that. Or you may choose medical and give birth. Its a personal choice as to what you wish to do.

Giving birth if you choose to do this is a bit painful but not anywhere near as painful as full term birth and you can have all the pain relief you need. I found I didnt need much at all. I found it a strange mix of utter heartbreak and euphoria as I cherished meeting my baby girl and giving birth is such a powerful and hormonally charged event anyway despite the heartbreaking circumstances.

Whatever you choose you will be very well looked after and your wishes will be respected. Update us and ask any questions you wish. As Ghislaine says there is a support thread you may wish to access at some point which is very helpful. Love to you and your DP.

misty0 Wed 06-Jul-11 11:06:11

Cat - Firstly set me say how sorry i am to hear this, and offer a hand to hold sad

I know you must be in a terrible mixture of shock and grief right now. My story is almost idintical to Gislaine's, above, by coincidence. Same point in my preg. for termination ect. I had a general anasthetic and was in hospital for a day (the staff were wonderful). Again i echo all of the above - insomuch that it can depend on where you are in the world/country as to hospital procedure.

I felt no pain on the day. Only a strange peace once i had come round from the anasthetic. I think the reason for this was that the very worst part of the whole process was the part you find yourself in now - the shock and waiting - and the immediate run up to the termination - again the awful waiting and worrying.

There are ladies posting on the 2 big threads here who have had different circumstances and have had to terminate at different stages of their pg's. Im sure all of us will try to answer any questions you have, sweetheart, if we can.

Again i'm so sorry you have found yourself here - but we will help you as much as we can <<hugs>>

Keep talking x

misty0 Wed 06-Jul-11 11:07:39

X posts with you cherry, thats why i didnt mention you! x

manitz Wed 06-Jul-11 15:08:39

hi i terminated a pregnancy at 26 weeks in 07 and again at 13/14 weeks last october. The last baby had t21 which was indicated by 6mm nuchal fold and hydrops (where the liquid was also round the head and down the back). Because of my previous termination, as soon as I realised there was something wrong I immediately wanted a termination because I knew it would be better to have it early and I wanted surgical not birth. Because I have also had two csections so they said that a surgical termination would be really risky as my womb would be thinner at the scar point. Therefore against my wishes I had to give birth (a medical termination).

It is like a scaled down version of labour as the cervix only needs to get to about 2 cm and it took two hours from beginning to end I didn't need any pain relief. I saw my little boy and was also able to see the hydrops which helped me deal with my choice really well, I didn't hold him as he seemed too delicate but I spent time with him and touched/stroked him and chatted to him. The hospital took a picture for me and we had him cremated. To be honest as well as being sad for him and for the outcome of that pregnancy I also look back on that time in a similar way as I have to my live births he is my child and I will never forget him but I have no regrets about the choice I made as it was right for us. I am also personally very glad to have ended up giving birth rather than with a surgical termination as I think it helped me deal with it - I think it depends how you deal with these things which is best for you.

I have also heard of babies with high nuchals whose outcomes are much better than my child's and so I hope you are one of those and don't need to think about a termination. However for your information the process for medical is that you take an anti progestorone tablet then return to hospital about 2 days later where they give you more drugs to start the birth they told me up to 12 hours for birth but mine was pretty quick. Sorry you are in this position. xx

mrsbigz Wed 06-Jul-11 23:11:05

hi Cat - i read your post earlier, but i was at work and wasn't able to respond when i first wanted to. i just wanted to firstly say (echo others here) how terribly sorry i am that you are in this position. your scan sounds quite similar to mine, my baby had a nuchal measurement of 7.4mm and the fluid went from her head right down her back. we were given a 1:5 risk for T21. we were 13+1 when we had the scan and were told it was too late for cvs so we had to wait until i was 15wks to have an amnio performed i needed to know what we were dealing with. the fast-track results came back confirming our little girl had T21, we still weren't 100% sure what we would do - it's a godawful situation to be in, and one NOONE can understand unless they've been through it. we went for a cardioscan at 16wks and the outlook there wasn't good either, and the large nuchal was now referred to as a cystic hygroma, which although not conclusive by any means - also did not have a particularly positve outlook. we took the heartwrenching decision to terminate - we have 2 young boys and had to consider what the impacts would be on them, not just ourselves. i was 17wks when we terminated, and and like others, i took a tablet (anti-progesterone) and then went back into hospital a couple of days later and was given picotin to induce labour. the labour was quick (about 4 .5 hours) but i have to admit it was quite painful, i was given a drug (can't remember what it was called now) to ease the pain. the actual birth experience was very peaceful. my husband and i had been unsure up to that point about whether we wanted to see our baby, or even name her, but when she was born we knew that we did want to. we spent some time with her, the hospital took a picture, and hand and footprints, and we also had a ceremony and burial through the hospital that was all dealt with extremely wonderfully by all staff involved. we know that we made the right decisions for us and our family. it's such a horrible situation to be in. as misty said, i found the part you are in now the worst - the bit between the initial scan and then the waiting for results, and then waiting for the termination. following that i felt a strange sense of peace. i still miss my daughter terribly and think about her every single day, but i think my husband and i are at peace with ourselves and know we did the right thing for her and us.

your nuchal measurement IS high, there is no denying that, BUT there are good news stories out there from people similar measurements where everything is ok. the only way to know for sure is to have invasive testing, and of course once you have that testing you then need to think about what you woud do with the results.

I hope that you come and find us on the support thread mentioned....there are many of us who have been through the same thing and they are a lovely bunch of ladies who understand.

wishing you lots of love and strength over the next few days and please keep us updated on how you are doing.

xxxxxx

blacktreaclecat Thu 07-Jul-11 07:53:46

I'm wondering if I know you from another forum dw.
If so you know my story but I'm glad you've found your way here . Come and join the big thread when you are ready.
If I haven't met you I'm so sorry you are going through this

Cat98 Fri 08-Jul-11 20:28:22

Thank you for all your messages. From speaking to the specialist he thinks the pregnancy has a very bleak outlook, we will get the second opinion but I would imagine we will be looking at termination. I am up and down, cvs and scan not until monday, terrible day yesterday but feeling a little better today.

I also spoke to ARC today about the different types of termination and I think I am leaning towards labour now, though the procedure will be worse I think there are things that are positives for us. Though again we will chat to the specialist. I don't even know if our hospital offers memorials etc, I hope so.

blacktreaclecat - you are correct. Does your name on the other forum start with "A"? Thanks for all your help.
Any more experiences or advice welcomed.

Cat98 Fri 08-Jul-11 20:31:08

I am so sorry that so many of you have had to go through this or worse sad

mrsbigz Fri 08-Jul-11 22:16:00

oh Cat, i'm so sorry to hear that your specialist doesn't think your pregnancy has a good outlook. it's the worst thing any mother to be can hear sad if you want to chat at all over this weekend, i and many others will be around to listen. if you have any more questions about the labour or delivery or anything please don't be afraid to ask. we have all been there sad
i remember now that the painkiller i was given during my labour was diamorphine - which i think is offered as standard when you go through this. and, although i can't say for sure - i also think memorials etc are offered as standard with most nhs trusts.
i hope that this weekend passes quickly for you, and that your cvs / scan on monday is as good as it can be. will be thinking of you xxxx

mrsbigz Wed 13-Jul-11 09:47:27

Hey Cat - i just wondered how you were doing. Did you have the CVS / scan on Monday? if so when do you get your results back? Hope you're holding up ok and please remember where we are if you need to chat xxxx

misty0 Wed 13-Jul-11 18:01:14

Cat - thinking of you love. How are you and how did Monday go? xx

Cat98 Mon 18-Jul-11 12:19:27

Hello,
Well it has not been a good week. We lost our baby yesterday. The prognosis was not good (highly unlikely that the pregnancy would have made it, if it had the information was that the baby would not have had any quality of life) and we made the heart wrenching decision to terminate. The experience was awful as I know sadly many of you know.

We saw our baby, he was beautiful. We now have to decide about memorials and I'm hoping some of you can help. I know it is very personal how people deal with these situations and we feel it would be helpful to have something small to say goodbye. Our baby has gone for post mortem now but we can either opt for the hospital burying our baby with others in a remembrance garden, though there would then not be an individual service. Or we can find out about making private arrangements.

I'm wondering if anyone here made private arrangements and how it worked? We would just want something basic, DH and I want to say goodbye and if possible somewhere we can visit. Thank you for any advice/experiences.

cherrybug Mon 18-Jul-11 12:42:50

Cat - I'm very sorry to read your news. Love to you and your DH.

I ended my pregnancy last October when my baby girl was 20 weeks. Prognosis was similar to you but caused by a rare chromosomal abnormality which only came to light in full amnio results. We thought we were in the clear after the fast results as they initially suspected T21.

Anyway we had a short private ceremony with our close family at the local crematorium. It was arranged through the hospital but they liased with a funeral directors. As I understand it funeral directors dont charge anything in this circumstance. Anyway it was exactly right for us, the hospital chaplain did the service, my OH carried in the coffin and read a poem and we have our daughters ashes at home with us now. When the time is right for us we will scatter them.

It's a devastating time but having a funeral like that helped us. It's different for everyone and there are many ladies here who have had hospital burials with other parents in attendance. I'm sure others will be along to tell you of their experiences. You must do what feels right for you.

you may wish to post on the support thread The lovely ladies here are very supportive and know what you are going through. Cherry x

misty0 Mon 18-Jul-11 12:52:37

Oh love. I'm so so sorry.

I'm sorry i have no advice about memorials as i never saw my baby. My termination was my closure. Other ladies here, however, have had services and will be able to tell you more.

Look after yourself carefully these next few weeks. Please take your time to grieve and dont expect to much of yourself too soon. On the other hand if you feel like laughing with your DH about normal life things/telly whatever then do. Dont feel guilty. Its exhausting grieving 24/7.

Please feel you can come here on your thread, or over on our big one and talk. You can talk about your feelings or ask us anything. We've been there and we know how hard it is. I found sometimes i wanted to talk, but didnt want to 'bring down' my OH if he was feeling chirpy that day. It was always a comfort to come here and talk to the other ladies. Sometimes just about a load of nonsense! No one will ever judge you here. Massive virtual hug for you sweetheart.

xxx

louzie Mon 18-Jul-11 13:30:05

Hi Cat,
So sorry you find yourself here, but hope the stories on here can help give you some comfort and support.
We lost our baby Fern at 24 weeks last November following a diagnosis that was incompatible with her survival. We had a short private service and cremation as I wanted to feel I was taking her back home with us afterwards. The funeral directors were fantastic - very understanding, supportive and helpful. Also, most of the costs were met by the NHS and we only had to pay for 'extras' eg we chose a willow basket for Fern. We also spent a lot of time choosing readings and music for the service, which although was held by a chaplain, was fairly secular. I'm happy to answer any questions you might have.

ghislaine Mon 18-Jul-11 13:34:01

Dear Cat and MrCat, I'm so sorry.

Our hospital offered us a private burial service (could have had cremation I suppose, but that was never pursued, as mr ghislaine and I want to be buried when the time comes, so we wanted the same for our baby). There was no cost involved. It was done by a local funeral company who do all the baby funerals. The hospital supplied the casket. We were asked what we would like engraved on the plaque on the casket and if we wanted to have anything put in the casket (flowers from our garden, a poem, a toy etc).

The service was held at the local cemetery in the babies' section. Baby came in a hearse from the funeral directors and we met them at the cemetery gates. (By them, I mean the Roman Catholic priest who was also one of the hospital chaplains and an undertaker.) We had only a graveside service but you could have a chapel service as well. I don't remember much of the service but I did touch the casket before it was placed into the grave. My husband carried the casket from the car to the gravesite and we had it at our feet during the prayers. I do remember feeling pleased that my baby had such a nice spot to rest in - by a tree, with dappled sunlight playing on the plot & I felt very connected to him during the service. We visited the grave on his due date and I found that a very surreal experience but one I was driven to have.

One thing that was stressed to us was that we should wait a year before getting a headstone so that the soil would have time to settle, otherwise the headstone can canter over. Everyone involved was incredibly sympathetic and kind. I did feel a big emotional shift after the burial, it really helped with my healing and my husband found it a great help as I had a surgical termination so he was not able to be with me, and did not see the baby (nor did I).

It is an awful time, and one I could not really believe I was in the middle of when I was but at the same time I found it a positive thing to be doing for my baby in the circumstances.

MyangelAva Tue 19-Jul-11 15:49:19

Hi Cat, I'm so sorry to read your thread and hear your news. It really is a horrendous time, which no mother should have to go through.

I had to end my pregnancy in Jan at 26 weeks because of a diagnosis of Edward's Syndrome (which is fatal). Due to her gestation we had to have a funeral by law and was offered either a communal burial (on hospital land) or private arrangements. Our hospital put us in touch with 'their' funeral director and we arranged a private cremation and service. My DH was dead against going as he thought that it would be too traumatic but I felt it was important for me that we be there for her. We are both so glad that we went. The hospital chaplain (who had blessed Ava when she was born) delivered the service, which was only short, and only my DH and I attended (through our own insistence). It was a real benefit for me as I felt that it gave me some sort of closure to that horrific chapter. We had a choice of casket and I asked for her to be cremated with a teddy of which I have an identical one. I have not yet scattered her ashes. The funeral directors provided their services free of charge and we had to pay only a nominal fee for her casket (as we chose a different one).

Thinking of you and your family xx

MyangelAva Tue 19-Jul-11 15:51:20

I forgot to mention, do you have a bereavement midwife or counsellor from the hospital that could put you in touch with someone re funeral arrangements? Ours was fabulous for all the practicalities and really helped to take the pressure off us as we did not have to explain anything to her. X

Cat98 Tue 19-Jul-11 16:06:24

Thank you

All these replies are really helpful. We are seeing the bereavement counsellor next week so I will talk to her as we don't really know where to start at the moment. It is useful to hear all your different experiences which will help us decide.

manitz Tue 19-Jul-11 19:59:18

hi cat. I'm really sorry to hear your news. I had similar experiences to others. For my first baby I had a cremation arranged by the hospital and for my second I had the same but it was with other families - this is what my hospital do for babies less than 24 weeks gestation. I have to say it was a bit strange to share a very personal moment with strangers, but I am not all that bothered by funerals and memorials so would probably do the same again.

The babies ashes were scattered at a memorial bench for the babies that have been born early from our hospital. I haven't felt the need to visit it and neither do i for my other dead relatives so i guess that's just the way it is for me. We chose a song for val the first baby which was quite nice, sometimes I listen to that and have a cry. x

mrsbigz Tue 19-Jul-11 20:56:59

Hi Cat, i'm so terribly sorry to hear about the loss of your baby. after i lost Eve back at the end of March, i was on a complete rollercoaster of emotions, for a few days after the termination i felt strangely at peace (which was kind of reassuring as we knew we had done the right thing) but after about day 3 the emotions and grief came in waves. 4 months on and i still have a cry every day, and sometimes things can take me by surprise (stupid things like a tv advert!?) and i'll burst into tears, but although i know it is a huge cliche, time is a great healer....and every day does get a little bit better.

Eve was delivered at 17 weeks. we got to hold her and the hospital took a photo and also took her hand and footprints. we chose to have a the funeral arranged burial. neither my dh or i are particularly religious at all - which is why we didn't go for the private ceremony, but we wanted to do 'something' to remember her by. also we knew that at the hospital service her name would be read out and we couldn't bear the thought of us not being there to acknowledge her. actually the service was quite nice. it was surreal being in a room with other grieving parents - but at the same time we all had that 'bond'. after the service, we were able to 'hold' her casket - i was able to talk to her and tell her she would always be loved. the casket was a plain white one with a brass plaque with her name on. with her inside was a little blanket to keep her warm, a teddy (of which we have a matching one), and a photo of our family, so she knows we are always close by.
the burial itself was the following morning. i was worried this was also going to be lots of parents but actually they gave everyone a 'time slot' - we were first in the morning. it was a beautiful sunny morning, and the hospital chaplain said a few words and she was lowered into the grave. the grave is a shared grave, with all the babies born too soon from the hospital put in there....initially i hated the idea of her 'sharing' her grave, but from the morning of her burial i actually warmed to the idea, as (in my head!) i thought of her having lots of little friends around her, and not being lonely. she is buried in the childrens corner of a local cemetary, and whilst it is obviously a very sad (in one respect) place, the actual area is very fitting, lots of trees that let the sunlight through, wind chimes, windmills, loads of toys everywhere.

About a week after she was buried my dh bought me a heart locket, and inside it is the prints of her little hands and feet - i wear it all the time, and it is a great comfort to me

sorry if i've ramble on a little. i hope these next few days and weeks are okay for you, and remember we are always here if you need a chat xxxxxxx

jaabaar Thu 28-Jul-11 23:10:13

Cat, I am so sorry for what you had to go through. It is unimaginably hard sad.
Time will heal, you will never forget but time will heal...

I find great comfort to plant a tree. Just an idea. In the park.

Sending hugs xx

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