Here some suggested organisations that offer expert advice on SN.
maybe wrong place but could do with advice 're pg(52 Posts)
I've been a lurker and occasional poster for a long time but have namechanged after was outed in RL.
DC1 is two and a bit, hemi CP and seizure disorder after oxygen starvation during a mismanaged labour. Doing well but parenting is different, lots of input and therapy but overall we manage.
I'm 17 weeks pregnant. DH and I haven't told a soul yet, no intention to tell until 20week scan; and even then we are planning on just telling work.
I'm terrified in a way I didn't think I could be. I've posted in pregnancy and got good advice but I don't think people "get it", baby is wriggling and letting me know he/she is ok but I haven't bonded, can't contemplate having a healthy newborn in my arms as it were
Just wish we could be happy and carefree like the mums to be in boots and M&P, if anyone has ajy words of advice or a mantra it would help us to hear it..
Congratulations, please mke sure you tell your midwife how stressed you are about this pregnancy.
I had an awful delivery with Dd1, she was a feet first breech who was eventually hauled from me with forceps. God knows how she avoided being seriously damaged.
When I had Dd2 7 yrs later I made sure that everyone knew I wasnt going to go through that again. I kept going on and on until I was sure I had got my point across.
When Dd2 was eventually delivered it was very calm, in a birthing pool with 2 of the most experienced midwives in the building in attendance.
Make sure you get your feelings heard and kick off big time if you dont think anyone is listening.
I think you just have to try and enjoy your pregnancy. The odds of you having a normally functioning child are hugely higher than not.I had a genetic link but loved both pregs ( NF Dd and autistic DS)
Thank you both, I have been trying to enjoy it but it isn't happening. I have a referral to a psychologist via GP which should be coming through in Feb (earliest they can get me in). Midwife is booked for Friday and she is lovely, haven;t seen her since 9 weeks, she has promised to support me thoughout the pregnancy and although community will try to be there when I go in to have DC2.
As for the labour - can't process it. At all
I understand how you feel - although slightly different circumstances. DD was born with rare chromosome disorder which wasn't picked up ante natally. When we conceived DC2, we didn't tell anyone - not even family - for as long as possible. As DD had a genetic disorder, we opted for CVS testing at 11 wks and got the results within a few days, but even when results came back fine, I was never relaxed with the pregnancy, wanting every check going and never believing that DS would be OK until I actually saw him after he was born. I felt Like I had to fight for everything as noone (except GP, who fully appreciated DDs level of need) seemed to understand how I felt.
Even after DS was born, the midwives tried to discharge me from hospital the next day, even though I needed help with breastfeeding (as I had not been able to BF DD). It was a case of "this is your 2nd baby so you know what to do". Actually, no, baby no 2 was totally different to the traumas experienced with baby 1.
Sounds as though you have a supportive GP and Midwife team which is great, but nothing is ever going to take away what happened last time. You just have to try and be as reassured as possible by the professionals, but until you are holding that baby in your arms, it is impossible to be convinced that it will all be OK - even though the odds are stacked highly in your favour.
Good luck with the rest of your pregnancy and with concealing the 'evidence' until 20 wks - I had to confess all at 14 weeks as it was impossible to hide any longer.
You'll be ok when the baby comes. This is 'just' fear paralysing your emotions, and psychologists are very good with fear (the rational how-will-I-Cope, the semi-rational will-it-happen-again, the guilty fear of not having enough love for two babies. And lots of women struggle to bond before birth, especially after a difficulty.
It's nice to have the community midwife promising to try & pop in, she sounds great. I think you'll get good care, they'd worry you'll sue their ar**s this time if the smallest hitch occurs and the consultant isn't waiting outside throughout your labour.
Would it help to ask which sex? Or look for one of the 4D scans?
Skin-to-skin, hopefully a bit of suckling and then the oxytocin hormone bonding rush will kick in. Sling is good too, means you can 'cuddle' even when your ds needs you. I needed to arrange some practical help after the birth, would guess you will too so you and bubba can have some sort of babymoon.
I am glad you have a referral to a psychologist red, a traumatic birth experience can have lasting effects especially when your baby suffered damage.
I really hope it helps.
I wouldnt dream of telling not to worry about labour but with some good support you will get through this and what sick said about more babies being born without disabilities is right even though that is really hard for you to think about at the moment.
Keep coming on here for support and good luck
Already had a heap more support here so thank you.
Issue with labour is the toss up between cs and natural delivery, induction when not ready to labour is considered by consultant to be too risky as is going more than a week overdue. But a CS makes me sad and worried as well, so rock and hard place.
We will find out the sex at 20weeks and hope that will help, and maybe a 4D scan also a good idea. Ultimately I have to trust the same delivery unit as damaged DC1. And that's a real leap of faith.
I was shitting a brick about labour with my second, after a long, mismanaged delivery with DD, who was yanked out with forceps once they finally realised the poor thing was completely and utterly stuck. She has some problems, but nothing like you have to cope with. I happened to be seeing a consultant for my second pregnancy for an unrelated heart condition, and I found it very reassuring to be told that I would definitely only be allowed to push for an hour before they intervened with any subsequent deliveries (pushed for six with DD before the registrar was called). Armed with this reassurance (and the number and name of my personal consultant) I felt much better about it all and not nearly so scared. As it happened, DS crowned before I knew what was happening and he slid out like a greased piglet. I really really hope this is your experience too.
I didn't bond with him in the slightest before birth - I was caught up with my eighteen month old and her needs, a bit disappointed that he wasn't a girl to be honest, and I felt like the poor little mite was getting a dreadful lot in life. After a week or so we were just as bonded as I was with DD, but it took time and I was lucky that I sort of expected that was how it would be. If it takes you a while, there's nothing wrong with that.
After dd2, the consultant obstetrician recommended that I not labour in any future pregnancy. I have a note on my med file essentially saying 'this woman is to have an elective CS'. End of.
It is a much easier decision for me - I had CS with dd1, my pfb, who is alarmingly nt (for macrosomia - they told me she was 9lb 13oz and could be a pound heavier) so I have already had a CS and am not either squeamish or worried by them (particularly as neither of my two subsequent vbacs are nt, dd2 obviously for the same reason as you, and additionally ds1, where I had an extended back to back labour and was minutes away from an emergency CS when I managed to push him out, effectively knackering my fanjo...)
Why does a CS make you sad and worried? I know for me that a CS would be the only possible way I could countenance birthing again... (As it happened, dd2 was dc3, and because of the trauma dh actually went for a vasectomy when she was 3mos old) but I've already had one, so I know what to expect...
Congrats on your pg, though.
I haven't been through what you have but my DS1 died in utero due to severe and early preeclampsia and I was also very poorly. Preeclampsia is something that can be more likely to happen in subsequent pregnancies, and DS2 was born at 31 weeks by the same sudden onset preeclampsia, by emergency section. When DD was still not born by 35 weeks and I was offered a section I took it gladly.
A planned C section was much much calmer, less scary and less stressful for me than having to wait around to see if I had history repeat itself again. I would recommend that you seriously consider it. The baby is out extremely quickly and then you can still hold them straight away and attempt breastfeeding very quickly. The downside is the wound but a lot of people who have horrific births are worse off with injuries caused during birth.
Hope this helps and wishing you all the best.
needingsomeadvice I am so sorry for your loss
I saw MW last week and she assessed me as PTSD (which isnt a massive shock) and this is apparently not good in pg as it can lead to lower birth weight babies, poor bonding and PND. She asked that I see the gp to chase the psychologist as an urgent referral. Saw GP today and he hasn't done a psych referral at all but instead sent me to the high risk clinic.
Who when I saw them at 12 weeks said they had no way of supporting my mental health other than to give me a guided tour of delivery suite and arrange a CS. Thats it.
Idiot GP. Has he referred you now? Can you self refer to the mental health team?
Just talking it over with dh who is beginning to get worried as well. I went through all the birthing options with consultant at twelve weeks, mw last week and gp today. I have to deliver in the same unit as before, and the way its going I'll be doing it with no decent coping strategies at all.
Im going to ring mh team tomorrow and also the specialist hv who may well be able to pull some strings.
This might sound insane from where you are, but would you consider a Homebirth?
I found planning for a birth on my territory, on my terms, fully researched meant I never went into panic and began to relax and look forward to the birth.
I always planned it as 'starting at home' and see how it goes.
I also refused any medical intervention unless there was medical necessity, of which going overdue was not one. If any sign of problems then straight from 'natural' to section. Absolutely NO manhandling iyswim.
If not, I'd recommend hiring a doula.
Woukd really like a home birth but midwives refuse to support it.
In our situation going overdue is unfortunately a risk and one im not comfortable physically or mentally taking.
If I do go into labour naturally then it will be a case of no manhandling at all should there be issues.
But we have looked into a doula and I'd love to aim for a hospital water birth. We see the new (meant to be kinder) consulant at end of January so may have more options then.
Saying you're having a home birth but only because of fear of their labour ward is sometimes a rapid route to senior assessment and a more helpful approach
Midwives are more or less obliged to attend home birth (or try to anyway) even if they think it's a stupid and dangerous plan.
The community midwife has flatly refused to attend or enable a home birth for me. Even a doula refused to attend a home birth as she felt the risk was too great.
The hospital has admitted they fucked up, they've admitted i have every right not to trust them and be fecking terrified of the delivery suite, this baby has to come out somehow and even if I ran away and hid in a cave for the birth id be putting myself and the baby in quite serious danger.
I guess a hotline to a psychologist could improve things...
If you don't mind me asking, what are the risks of a)Homebirth and b)going past 40 weeks?
I'm asking because hospital, and early birth also carry risks.
Despite a Haemorrhage with my first, I knew that my best chance f avoiding both that, and the repeat of the other malpractice that occurred if I was allowed to labour optimally.
For me, a hospital birth was no longer the safest option despite the life-saving equipment on site.
Not trying to encourage you into something you don't think is safe, but don't let policy and protocol dictate what you are told is best.
OP -- I have been in your situation, and I really, really feel for you. My first child was born at term after a completely straightforward pregnancy which culminated in a nightmare birth where I had a placental abruption and the baby was in the OP position, so could not be delivered easily. It ended up with an emergency general anaesthetic and the use of ventouse to get the baby out. By then DS had suffered severe oxygen deprivation and has athethoid CP.
I could go on at length about the horrors of the birth, not to mention the days on SCBU, the terrible lack of post natal care after the emergency op,the unrecognised PTSD, coming to terms with having a child with a lifelong disability etc etc, but the main issue is that the first birth was enough to put anyone off having a baby for life, and I suspect your experience has been pretty similar.
DS is now 22, and I also have DD1 (20) and DD2 (18). Over the years I have realised it is comparatively unusual for women like me (and you) to go on to have more children, because the distress over the first birth and outcome is so great and because doctors and everyone else have so little understanding of what it is like to go into a delivery room again after the first disaster. I can only tell you what it was like for me, and hope that this may help you:
1. Congratulate yourself that you are having another baby and appreciate that this is a major achievement. Very few women are brave enough to do what you are doing and you need to recognise it is hard. You also need to recognise, unfortunately, that you are not going to have a happy, calm, Mommas and Pappas type pregnancy -- it is normal, given what you've been through, to be worried sick the whole time. The question is how you manage the worry.
2. I also returned to the 'scene of the crime' (ie same hospital and delivery suite) for the 2 subsequent births. It helped that my GP wrote to the consultant reminding him of the previous problems and suggesting we did not want a repeat. When you see the consultant later this month, please emphasise to him the horror of what you went through. Also be aware that just seeing some of the equipment/places is likely to induce strong emotions -- I went to do a wee for some test or other when pregnant with DD1 and nearly keeled over when I saw a particular type of plastic chair, which I hadn;t seen since my previous delivery. Also, most doctors' response to what I went through was to order more medical checks/scans etc, even though medical intervention hadn't really worked out quite right the first time around. Far from soothing me, all this medical input just made me feel panicky. In the end, the GP agreed to do some of the checking and let me go to the surgery early while he was opening the post, so it seemed less scary. Maybe see if you can get a community midwife onboard?
3. Take particular care over scans. Make sure you have someone with you and make sure the radiographer/sonographer understands you have had a traumatic birth and have disabled child. With DD2, the radiographer suddenly said when looking at the images 'oh, I need to get you a leaflet about this' and then disappeared for 10 mins, leaving me and DH to fear the very worst. The baby had some kind of (minor) renal issue, and the specialist scan consultant thought we were wasting his time asking for his view on this, but the fact is that once you've had one unlucky 1million to one accident happen to you, you are always on the look out for the next rare thing that only happens to you.
4. I had an elective CS for both DDs. In effect no one -- not midwife, consultant or DH -- would agree to go into a delivery room with me and attempt a natural birth. At the time, I was very sad about this, and deluged with advice from friends about the virtues of going ahead anyway. However, I now recognise that the CS was the best option for eliminating potential problems at delivery, even if it didn't conform to my vision of having a happy birth after the trauma of DS's highly medicalised arrival. Compared to the mess, stress, muddle and outright fear that accompanied my first delivery, a calm, orderly CS was a walk in the park. Plus I got good post natal care on the ward, because there's a proper protocol for caring for women post CS, compared with the blank looks and lack of understanding the first time around. Also DH, who was left on his own in a windowless room with no idea if I or the baby were alive when DS arrived, quite liked being included in what was going on.
5. Try and find someone, either a therapist or a friend who's a good listener, who will let you talk about your fears. I was utterly terrified of a prem labour (having found that a lot of the CP kids I met with DS were premmies) and very confused about being worried about having a child with a disability, when I already had a child with a disability. It is natural to worry in this situation because you are so aware of what can go wrong -- this time, it won't but you need to be able to express those fears and not feel you are somehow jinxing the whole project.
6. It will be fine. It won't, in all likelihood, be much of a fun pregnancy, but you will have another DC and once that DC is in your arms, I promise you it will all be worthwhile.
HTH and best of luck.
Wanted to come back and say thank you to all.
I am now 27 weeks, baby will be delivered by ELCS at 39weeks. My DH and I spoke about this for a long time and I was becoming very anxious about the medicalisation of the labour and delivery. I was also becoming overwhelmed with advice by
mostly well meaning people on the power of natural delivery etc. I have a very big project to complete before I go on maternity leave at 37+5 and to be honest I am throwing myself into that and pretty much ignoring the pregnancy.
Ultimately however the issue deciding the ELCS was not to do with me but my DC1 who we couldn't find a single person to look after at short notice or during the evening.
I am still struggling to get decent MH help, originally asked for and agreed at 14weeks I have not as yet had even so much as a phone call. MW and Consultant both say its the GP's issue. GP say I can pay if I need help.
I can't afford it.
I rang my consultant 3 weeks ago to confirm that I would go for an ELCS and to arrange a date (around childcare for the child they injured last time) and as yet nothing. No call back. Have chased 3 times. Nope. No return call.
This is the * excellent support* which I was promised..
RWBW can you get your CMW to move things forward, put pressure on your GP, speak to your obstetrician etc?? If not is there a Consultant Midwife at your Trust? If all fails and if you are really not being looked after, please speak to a Supervisor of Midwives (contactable 24/7 via delivery suite). Sounds as though you are being given routine care when you in fact clearly need so much more. Good luck xx
Can't you be an NHS health tourist?
If you are staying at a friend or relative in a different part of the country when you go into labour then you will go to that local maternity unit, and not the team noone in their right mind would expect you to trust a second time.
I have an (moot as I'm single!) agreement that if I have another child I'll give birth in her neck of the woods rather than put up with the nonsense emitting from my own local PCT. Where she lives the maternity units are fab, I'm underwhelmed with my local offering.
Personally I wouldn't argue the toss with them, I'd just make damn sure my records were as up to date and accurate as possible till 8 months and then somewhere decent from 8 months onwards well out of their reach. . In laws etc have to be good for something and I'm sure after your first experience out of area family and friends would be only to happy to help.
Love the idea of being an NHS health tourist. I genuinely would prefer nothing more than to get the hell away from our outstanding regional hospital. However all our family live very close by, nobody I know that I could stay with would be outside our PCT. The reason we can't get child care from the family is due to DC1's seizures, frightens them apparently.
I've CMW on Tuesday when I intend to lose the plot totally.
I am HORRIFIED that the MH support you were promised has not materialised.
You should have had some treatment for trauma, really.
There is a very short, quick treatment which may be affordable for you? Eye movement desensitisation and reprocessing (EMDR). It is supposed to be amazing. It might be worth it for one session for about £50.
Dealing with the NHS, it sometimes also helps to start taking names, discussing things in terms of inadequate care, and basically acting as if you are considering litigation (which you would be well within your rights to pursue given the small amount you have said here). They might get their act together then.
Best of luck with the birth, really hoping all goes well for you all..
I was dx with PTSD after the birth but as yet have had no constructive therapy. I do have listening therapy via work though every fortnight, for over 18 months now.
I have fought with the NHS for my DC1 but as yet not for me, as you say its time to start getting very very serious.
I had to seek non-NHS help at one point for my son. With hindsght I think the NHS/LA felt that if they came up with the goods they were admitting liability for their screw ups iyswim.
I'm sure if you rang MIND, the NCT and "contact a family" one of the three would know of a local independent charity funded counselling and/or advocacy service that could help you.
This is one of those situations where it doesn't matter the rights or wrongs of it, all that matters is that you don't have a breakdown due to the appalling way you are still being treated.
A letter to the trust's chief executive, copied to your MP and the local patient liason service might get things moving in the right direction.
Patient Advice and Liaison Service will advocate for you in ensuring you get the care you are entitled to. You have been let down appallingly and it doesn't have to be this way. You can ask your Gp to refer you to third level Mental health services out of area if necessary if local services unable to meet need. The threat of having to pay out for that may galvanize them to help you locally after all.
I reiterate, Supervisor of Midwives or Consultant Midwife is the way forward they will have more of a handle on the situation, PALS will prob work at a snail's pace, time is limited. Get the name of the Head of Midwifery and mention her name and your disatisfaction, they will soon get the picture
Thank you, I'll get onto that tomorrow because I have to know for my own sanity when this baby is coming. I hate the hospital, I hate the delivery suite, I hate the fact I'm having to opt for an ELCS and also that everyone is ignoring my fairly valid request for help.
But mostly I'm just shit scared and also worried about how dc1 will cope and how not to cock up 'their' relationship and bonding with dc2 - normal second time mum worries with just a hint of extra concern. Ironically the only bit of the hospital I trust is the NICU.
Course you are scared. You had a terrible time and have been badly, badly let down.
Do 'lose the plot' with the mW today. Rage and scream!
Ok. So. 28weeks. 11 weeks to go.
No MH support.
I've heard nothing at all. Despite having explained how we needed to arrrange the CS for a date that we could get childcare for DC1 that THEIR HOSPITAL left with a seizure disorder.
Saw my community MW today and sobbed about how worried i was, she was shocked by the lack of communication. She rang the consultants secretary who told us that my CS date was booked and confirmed, and she also flatly refused to pass on any messages to the consultant as he doesn't take personal calls.
We cannot do the date I'm booked in for. Not only that but where is my choice that was promised? Where is the handling of my anxiety? Since when are ELCS bookedwith aabsolutely no discussion?
The Community MW said sure as shit is shit that my messages carefully explained had never reached my consultant.
I was promised choice. I was promised understanding and sensitive care.Moving to different hospital is simply not an option, we have one huge teaching hospital and nothing else.What the fuck do I do? I fight medical battles with the system on a weekly basis for my DC1, how can this be ok?
You have been let down so so badly.
This is awful. What can be done? Solicitor? And tell consultant secretary you will be contacting a solicitor? Silly person obviously does not understand the gravity of this.
Is there anyone else at the hospital you can try? Maybe your GP will have an idea.
PALS...but slow someone pointed out.
Tell the silly secretary you are now putting in a FORMAL complaint to the General Medical council about your care in relation to this consultant. The history with the first child's birth is public knowledge for the clinical care he oversees ffs.
MP and letter to the Chief Executive of your PCT. This is utterly disgusting.
Much better ideas, bochead
Get medieval now.
I agree with Bochead. Time for a formal complaint in writing. So sorry you are going through this. Also feel that your family feel they can't help out more. I was lucky that our childminder was happy to stay the night when my youngest was born.
If you live in London/Surrey borders I'll come and help you!
I asked the CMW today for SOM details and to write them in my notes.
Checked when I got home. No details.
But CMW said she was going to talk to her supervisor to try to find out what to do next, she also rang AN clinic and is trying to get me in to see this consultant in a fortnight. Part of the issue is that im not under consultant care until 34weeks so don't see him regularly till then, but we couldn't leave booking an ELCS until then as care for DC1 is hard to arrange.
I will definitely ring SOM tomorrow, I cannot risk having a home birth but at the end of the day I'm sick of this shit.
Time for me to write this up I think as a complaint.
Also need to try and find out if the PCT is breaking NICE clinical guidelines because it has absolutely no MH in pg provision.
How's the letter writing going? Hope you are feeling okay.
I have a lecture 9.15 - 11 so will get onto it after that. The letter is being sent to PALS and copied to the Consultant, the SOM and the community MW team.
Even if they arrange a CS date to suit us they still should never have arranged one behind my back without discussing it first. Especially as it had been made clear to them that our primary concern was to ensure care for our DC1 who they left brain damaged through negligence.
I have the details of how to get in touch with the SOM today and if we have no joy with her then I'm contacting my solicitors tomorrow - they are dealing with DC1's negligence case.
redwelly I'm so glad you have a solicitor. Was a bit worried about pressing you on that in case I sounded a madly litigious person and I don't particularly have experience to pass on, but it is the right thing. Hope it brings the right outcome for you.
CMW has managed to get me in to see my consultant in a fortnight for a short slot, however I've also drafted a PALS complaint about the secretary. I've been promised a ring back from the SOM after lunch - depending on what response I get from her depends on what else I put in my PALS complaint.
If all that fails then I'll get the heavies in (solicitors)
"Heavies" not the local thugs then? .
Well done, some progress made.
Supervisor of MWs is the way forward it seems.
CS was booked without discussion and apparently letter sent on Monday this week, its not arrived yet - and I am only too familiar with the hospital post it usually arrives the day after it was sent. SOM couldn't get past the secretary either so just went to speak to the consultant and date has been moved to a date we can make.
I'm still pissed off and annoyed it was done with no discussion, especially as the consultant promised he would be kind, compassionate and caring yada yada yada - although I've posted in Pregnancy to see whether others have a choice and I'm being extremely unreasonable to expect any kind of say in when I get sliced open.
I guess I'm just an unreasonable git then.
I think in normal circumstances you might not get much choice. If you were wanting it moved because it clashed with your manicure, yes, YWBU.
But I think it is fine to admit you are not in normal circumstances here! You and your DC have special requirements.
Keep plugging away.
I can rest a bit easier knowing that I will at least be able to have DD somewhere safe that can look after her on the day and also the day afterwards so DH can be with me.
Thanks you for the support on here everyone, I do truly appreciate it.
Redwelly hope all OK. Glad you have a plan for oldest's childcare, big weight off your mind.
Glad I saw this thread, RedWelly. I came onto the thread you started in pregnancy to say that I had discussed my date, and thought people were unnecessarily harsh to you. I then got told off by someone for 'bickering' and told to go and start a fb page about women's birth choices rather than post!! I hid the thread after that, but am glad to see you have hopefully got some childcare sorted for your dd.
Wishing you loads of luck
Hi hazeyjane I wanted to pm you to thank you for your support, but can't on my phone.
I was upset when I titled the thread but coukd probably have phrased it better. However my consultants letter wasn't posted until the day after my MW appointment, almost two weeks since the consultant had dictated the letter judging by the letter heading.
Have kept the postmarked envelope and the letter to show him when we next see him.
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