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harmony test shows positive for downs - medical termination info please.

(206 Posts)
AprilSkies44 Fri 17-Jun-16 08:51:20

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AprilSkies44 Fri 17-Jun-16 09:01:37

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stoptryingtomakefetchhappen Fri 17-Jun-16 10:44:36

Hi April

I am so very sorry you are going through this. It's natural and normal to run the gamut of emotions and all the feelings you describe above are the same as I felt.

I had a medical termination 4 years ago at 14 weeks, also for a chromosomal disorder. The risk was picked up at my combined screening but at that stage it's a risk only (although in my case very high) and I was offered either a CVS or amino to get a diagnosis. I went for the CVS and also had to wait for about a week for the results which was torture. During that time, DH and I discussed the possibilities and decided if it was bad news - as we suspected - we would terminate. Like you, we went through all the same emotions, but knew that it was the right thing for us.

Once we got the news, we were put on the list for a surgical termination but told if they couldn't fit us in in time we would need to have a medical one. I really really didn't want this and was very upset when we missed the cut off point for surgical. However, looking back, I felt like the medical termination was better for me both emotionally and physically. It was very hard, but it helped me come to terms with what was happening. It is also more natural - less medical intervention and less possibility of complications.

They gave me a pill about 48 hours before going into hospital which induces labour. The day before going in I started getting period pains which got worse over the next 24 hours. By the time I got into hospital they were quite bad but they gave me painkillers which eased it - just paracetamol at first but they pre-prescribe stronger including morphine if needed. I found pain wise it was ok and only needed the paracetamol. It took a few hours only, but they kept me in for 2 nights to monitor the bleeding. It was purely precautionary though and in retrospect I probably could have gone home the following morning.

The actual birth was not too bad. The doctors and nurses were very kind, sensitive and professional. They asked me beforehand if I wanted to see the baby, my thoughts on a funeral etc.. so they knew how to handle things once the baby was born. I chose not to see the baby, so all I saw was a bit of blood and some clots, all of which came out before the baby. The actual birth was very calm and not much pain. At that stage in pregnancy the baby is very small so it isn't too bad. I was obviously upset throughout but as I mentioned earlier in a way it helped me and DH to come to terms with what was happening. I would advise having someone with you though, throughout and of course to take you home.

I know it's easier said than done but try not to worry, it will be fine and whilst it is an awful thing to go through your body will know what to do and the pain is really not too bad. The emotional side is more complex - no one can tell you how you will feel afterwards. I did feel a sense of emptiness and of course extreme sadness but I also felt a strong sense of relief. DH and I felt mentally drained afterwards, and it took a couple of weeks off work to feel myself again. But the overall feeing was we had made the right choice for us and for our baby. You don't ever forget, and I still have all my scan pics, results and other memories but the actual process was much better than I thought it would be.

I hope the above helps in some small way with what you are going through. The key things are to have support over the next few weeks and months, and to prioritise yourself. Don't expect to get back to 'normal life' straightaway and give yourself time to grieve and come to terms with it. And always talk about it, if you are feeling low make sure you tell someone close to you.

Wishing you all the best

X

AButterflyLightsBesideUs Fri 17-Jun-16 10:52:15

I'm so sorry you're in this horrible position, my heart goes out to you. I have been through something very similar in December last year. My 12 week scan identified abnormalities and then a fetal consultant scanned again a few days later on Christmas Eve and diagnosed acrania ( a lethal neural tube defect). We were booked in for a medical TMFR the following week and I delivered my little boy on New Years Eve. From the placenta sample they took they uncovered that he had Edwards syndrome as well (T18).

Firstly, if you really want a surgical termination that is definitely possible, - it was the default option in my hospital - Gloucester Royal, I had to request the medical (I've had medical management before after DD1 died at 20 weeks, so felt more comfortable doing something I'd done before). If your hospital is pushing medical and you want surgical, ask who they can refer you to to do it as a surgical. Marie Stopes/BPAS might be worth a call to advise which hospitals/consultants will do a surgical termination after 12 weeks.

However, if you go for the medical, this is what I experienced:
You go in for a short appointment where they give you 2 tablets orally that prepare and soften the cervix. You go home and return 48 hours later and will be admittedly, probably to a gynae ward. They start by inserting 2 mesoprostyl pessaries right up by your cervix (but you can do this yourself if you prefer) and these should basically start a premature labour - contractions & dilation. You will then be given repeat doses orally every 3 hours until you deliver. I had 3 or 4 doses I think so it can take a while.

I experienced sort of mild dragging period pains from the meds and a hot water bottle gave a lot of relief. The pain only really ramped up for about 30 mins before the baby came and I found DH giving me really firm lower back rubbing helped loads. I didn't need pain relief.

I actually delivered my baby into a bedpan over the loo as that was where I was comfortable sitting.

The nurse then got me onto the bed and I sat over one of those inco pads whilst we waited for the placenta. She gave me the syntometrine injection to help it come away and with a small push or two, it did. They then give you some really strong antibiotics. I reacted weirdly to those and then vomited them up after about 20 mins.

There was some bleeding but nothing scary and after a couple of hours I had a shower and we were discharged a couple of hours later. I then bled at home for 6 weeks before it all subsided finally.

They were very keen at the start to stick an IV line in my arm as a precaution - apparently you can bleed very heavily at this stage of pregnancy, and it can be hard if this happens to get a line in for fluids/transfusion. I refused consent as needle phobic and said I'd take my chances and if I haemorraged they would just have to do their best to get a line in at the time. I didn't need it so it was the right decision for me.

In terms of grimness, the most upsetting thing I found was that the misoprostyl upset my bowels (very common apparently) and I kept having diahoerra. They make you do everything in bedpans so they know that everything has come out and I found that horrible - so embarrassed having to get someone to take away trays of my poo. Also, you will be nil by mouth the whole time (bar water) which isn't nice so try and eat plenty before you go in as it is long and tiring.

You say you are scared of what you will see - I remember being terrified of that before delivering DD after my late missed miscarriage. It wasn't scary at all, so much so that I was looking forward to being able to see my little baby last time and I treasure those memories. They are just very tiny little babies. The hands and feet are gorgeous, absolutely perfect minatures and only about the size of your little fingernail. The skin on early babies is sort of translucent and a deep red/purply colour, but almost tacky to the touch and easily damaged so we were careful to rest DS on a tissue and then hold him in that. Their faces are the least developed part, with big bluey/black eyes visible under the skin. The acrania was clearly visible on my baby - we could see the open spinal cord and his missing skull so we knew the diagnosis was completely sound if that makes sense, which I found helpful.

Your hospital should have a bereavement midwife who it might be worth asking to see. They can often you a listening ear, practical advice on what to expect, links to support groups/charities and a memory box to take home if you would like one.

I'm afraid your hospital will also ask you to make a decision about what to do with your baby's remains which can be a horrible shock to be faced with. They will handle it for you if you want, or you can take your baby home to bury eg in your garden, or you can make arrangements for a funeral director to collect your baby for a private burial or cremation. I recommend the Coop funeralcare if you chose this route. It was all free, and they were sensitive and respectful.

I hope this is useful info, though I realise it's a hell of a lot to take in and you must be reeling from the shock. Do you have support in RL?

Please feel free to ask any further questions, I am more than happy to share anything that I can.

Once again, I'm so very sorry, it's such a hard and sad thing to go through xx

maryso Fri 17-Jun-16 11:20:16

Huge hugs, this is a really awful time for you, April.

Foremost, remember that until it is confirmed, blood screening can get it very wrong. Even odds of more than 4 to 1 of Down's can be wrong; this happened for my first one. So you can't be sure without an invasive test. Were the limitations of CVS over amniocentesis explained to you?

When the results come, because CVS enables full chromosomal testing, there is a lot of information (although not on neural tube issues). You will be able to consider it all before coming to a decision. Without the wait, there is no information. If you can, try to park the mechanics of termination until the results, they won't change and you may never be in that place.

The wait is a very hard time, you have to draw from all your resources to stay calm, crying can be a release. I was on a hectic work trip a long abroad and that more or less filled the evenings in between all the meetings. It was a very long time ago, and I keep few memories, so it truly is a tough time. Cherish yourself and trust yourself.

AprilSkies44 Fri 17-Jun-16 11:58:24

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Tollygunge Fri 17-Jun-16 12:01:05

I can't post much BUT you can have a medical termination post 14 weeks- in fact I had one for similar reasons at 18 weeks. Do not let the hospital bully you into giving birth- ring Marie Stopes and also ARC. Recovery for me would have been far far worse had I not had this procedure. I get so annoyed at people being given this information.

AprilSkies44 Fri 17-Jun-16 12:15:44

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AButterflyLightsBesideUs Fri 17-Jun-16 12:38:20

It may be the case at that hospital but is certainly not universally the case. If you feel strongly that surgical is your preferred route then make sure they know that and tell them you want to be referred to a hospital/clinic that can do it. As I said my hospital had basically booked me for a surgical at 13 weeks before I had to stop them and say, hang on, I want a medical.

I completely understand you not wanting to be rushed and wait for the cvs results and would do the same. The other thing that occurred to me is that there is a huge range in prognosis for babies with Down's syndrome, have they explored with you how much they know about your baby's problems? I would want to see a fetal medicine consultant and have a detailed scan and discuss what they could tell at this stage about how the Down's was likely to affect your baby. If this is way off the mark and you definitely don't want to continue if you have a T21 diagnosis then I apologise and please ignore the comment, but I was just wondering how much information you are being given and whether it was enough.

AprilSkies44 Fri 17-Jun-16 15:01:07

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AButterflyLightsBesideUs Fri 17-Jun-16 15:33:24

If it helps, I had a room with ensuite shower & toilet so was completely separate from the open ward, thank god! And the gynae ward had a range of women, several elderly ones so I suspect the majority had nothing to do with pregnancies/terminations. I'm glad you've found a nearby clinic that can give you a bigger timescale for the surgical. Well done on checking that out, those calls are so hard to make.

I think there is a very small risk that the lining of the womb can be damaged during a surgical which can cause Ashermans/partial Ashermans syndrome, however that risk is very small. Plenty of women have to have ERPCs, often multiple times, after missed miscarriages or as part of a termination and in the vast vast majority of cases it has no effect on future fertility. I was also concerned about a general anaesthetic as I've never had one so don't know if I would be one of the unlucky people who react to it.

However, a medical isn't risk free either. As I said earlier, they thought there was a significant risk I would have a massive bleed warranting IV fluids or a transfusion. That was a pretty scary prospect I thought. There is also a not insignificant chance at this earlier stage that the placenta does not come away properly. I was warned that if that happened I would have to either go to theatre for a manual removal of it (with pain relief!) or be put under for an ERPC.

To be honest, it's not going to be much fun either way round, it's just about choosing what you think is easiest for you. It sounds like you are clear on this so stick to your guns. Most of this situation is so horribly out of your control, I think it helps a bit to be able to make some decisions. You've got a few days before you have to make a final choice. I hope your dp can support you either way.

All the best to you.

AprilSkies44 Fri 17-Jun-16 15:43:03

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WhingyNinja Fri 17-Jun-16 16:05:20

I have nothing to add, I just want to send you so much love and lots of hugs, please don't feel guilty, there's nothing you could do to prevent this, it's so unfair xxx

KittyandTeal Fri 17-Jun-16 18:05:59

As far as I'm aware the actual cut off for surgical is 16 weeks but past 12 it's usually at another clinic. Might be worth looking in to, and it sounds like you have.

Most of the pp have given you info which is the same as me. I had a tfmr at 22 weeks and lost our last baby at 14 weeks. I opted for media l management as I wanted to see him afterwards.

It is worse than period pains but no where near labour. I delivered my live dd1 with gas and air, she was 8.6lbs. Dd2 was 22 weeks and I had gas and air and morphine and still struggled. With ds at 14 weeks I just used gas and air and that was enough. Tbh I could have probably soldiered through the pain but I thought 'why the fuck should I?!'

I have realised that even though I know the tfmr was the right choice, our dd2 had T18, she was going to die either way. I still felt, and sometimes feel, guilt. It is a confusing emotion and I worried that I had it mixed with regret but it wasn't.

I'm not saying you should feel guilt at all, however, it is ok to feel guilt about it.

Arc are wonderful. I will also suggest sands. Many people (and I did too) thought that sands wasn't for them as they had a termination. This isn't the case, they support people who have lost pregnancies for whatever reason.

I'm so sorry you are going through this 💐

AprilSkies44 Fri 17-Jun-16 18:37:45

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Sweetheartyparty76 Fri 17-Jun-16 22:59:48

I'm so sorry you are going through this. I had a medical termination 2 years ago. I felt I had to as we wanted an autopsy to diagnose which skeletal dysplasia our baby had and what that would mean for future pregnancies.
I was 15 weeks at the time and the procedure made me rather poorly. The tablets made me vomit and I had a bad fever. The good thing was that I was in my own room and was very private. I also had all the pain relief there was available as paracetamol and codeine didn't really cut it. I was given pethidine and it was much easier and I think it helped me cope with what was happening. The birth happened about 6 hours after the pessaries but I didn't feel much and the placenta followed about 30 minutes after.
We were treated with so much kindness and compassion. We had visits from the bereavement midwife and they arranged the funeral for us. We were given a lovely memory box and a certificate which acknowledged that we had a son even though he was too young to be registered.
We were given the option to see our baby but we chose not to and now I wish I had. I don't have many memories of him except scan pictures and glimpses at the scans. We were also encouraged to name our baby but we didn't know what sex he was so I ended up googling from my bed for names to suit a boy or a girl. In the end we named him Hope.
After the whole experience, I felt no guilt only relief. My baby was so very poorly and now he wouldn't suffer.
Whichever option you choose, I wish you well x

AprilSkies44 Sat 18-Jun-16 00:12:51

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AprilSkies44 Sat 18-Jun-16 00:21:15

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kavvLar Sat 18-Jun-16 00:38:31

I'm so sorry OP. What a difficult situation and what tough choices. May you find the strength to get through this. God bless.

Sweetheartyparty76 Sat 18-Jun-16 10:48:36

Thank you April. You are not alone. Arc were so supportive and it was helpful to share with other mum's going through the same thing in their forum, most of which were for the same diagnosis.
For me, I needed to know the sex and I needed some acknowledgement that my son lived, albeit briefly and giving birth to him helped give me closure. The physical recovery was quick enough but obviously emotionally took much longer.
Take care and I hope you find peace x

AprilSkies44 Sat 18-Jun-16 11:40:31

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AprilSkies44 Sat 18-Jun-16 12:57:31

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Tollygunge Sat 18-Jun-16 16:13:23

I could not have gone through labour, and I was much further on than you. In fact, I've been through this twice (but different conditions to you) I've never really understood why some people do go through the birth- it honestly would have killed me, and I'd never have recovered. As it were, I went to sleep and woke up and then then physical recovery was easy. Emotional recovery not so easy. ARC were amazing. I organised my termination for free through Marie stopes- just rang then and was a day patient. Xxx a lady at ARC told me 'you chose to suffer every day so that your child wouldn't suffer for even one.' This brings me comfort.

KittyandTeal Sat 18-Jun-16 16:33:47

I was the same with lots of baby pop ups. I spent ages googling and window shopping loads of non baby/maternity stuff in the first few days just to get rid of them.

It sounds as though you have very strong feelings regarding the surgical procedure and so I think you should contact your bereavement or screening midwife and as them to set something up for you.

Backingvocals Sat 18-Jun-16 16:41:13

So sorry you are going through this April.

Just wanted to endorse what TollyGunge has said. I had a surgical termination at 16 weeks - also for downs. Had this done at Marie Stopes and it didn't cost anything although my lovely mum wrote them a big cheque anyway in gratitude and to support their work.

I am so grateful it could be done this way. I had an injection, went to sleep, woke up and it was all done. A horrible time made better by the care I had. No regrets.

Best wishes for your next steps.

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