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How to get through to the anomaly scan (after previous baby with major problems)...

(14 Posts)
WhatAHooHa Mon 21-Apr-14 09:24:40

I'm about 11 weeks pg with baby number 2.
I enjoyed my first pregnancy immensely - loved dreaming about the little person inside of me, trying to picture them, reading all the info I could about the changes they went through every week etc, until at my 20 week scan where we we found he had a major congenital heart defect that would require surgery. I spent the last 18 weeks of that pregnancy emotionally detaching myself from the baby - the survival rates from the various operations weren't great and pretending I wasn't pregnant was pretty much the only way I could deal with the thought that my beloved baby wouldn't survive.

Almost 2 years on, he is doing well - but those first few weeks where we spent hours watching his stats fall as we waited for him to be strong enough for his operation, then waiting for him to come out of surgery, sitting by him in paediatric intensive care for over 2 weeks (doctors had thought we would be back on the ward within 3 days, but his lungs collapsed and they couldn't get him off the ventilator) have stuck with me and I still shed tears over how much pain he was in and how bloody unfair the whole thing was.

So, on to this pregnancy. I'm so so terrified that this baby will end up having problems too - I find myself, once again, pretending to myself I'm not pregnant, just in case. I keep waking up in the middle of the night in a panic then crying myself back to sleep, worrying about what could go wrong. I can't bear the thought of putting another baby through all that, of watching them fight for every breath, of seeing their swollen, bruised body when they come out of surgery, of forcing them to be poked and prodded about by scary strangers in white coats - a process which upsets ds more and more as he gets older and more aware of the people around him.

I don't know what I'm looking for really. Someone else on here must have been in the same boat - how did you cope? How do you get through to the all-important anomaly scan and (hopefully) an all-clear then? There's 10 weeks to go before I can know either way and I can't carry on like this. I'm falling apart.

HopefulHamster Mon 21-Apr-14 09:50:52

Have you had your 12 week scan yet? I haven't been through the same circumstances as you, but I did have a miscarriage before this pregnancy (found at an early scan), and when I was pregnant with my son he was fine, but during the anomaly scan they did have to stop and call in consultants because they were concerned about his heart.

As a result I am very anxious about scans and tend to cry through them! It's totally understandable and it makes you realise how lucky/naive people are when they just sail through them assuming everything will be all right.

One option you could consider is having some private scans inbetween the official ones - there must be places where you could explain the situation and effectively ask for reassurance/earlier medical checks. You just have to weigh up whether the extra scans will in fact reassure or if they'll make you more nervous.

I was tempted to have a private scan before my 12 week one, but in the end I was so nervous of the scan itself that I just waited.

Hopefully someone will come along who has been in the same situation as you and can offer better advice smile

HopefulHamster Mon 21-Apr-14 09:59:18

As for coping, I will admit I slept a lot before my 12 week (still waiting for 20). I normally do a bit of creative writing as a hobby but that allowed me too much time to think and I'd end up googling things instead. Also read a lot of books on my Kindle (comfort read stuff), and watched a lot of easy TV.

WhatAHooHa Mon 21-Apr-14 10:06:20

Thanks hopeful. No 12 week scan yet - I did ask the midwife to see if she could get me in a bit early as I'm finding this so hard but she didn't really seem to acknowledge my anxieties, just wanted to brush over them. I haven't even had the appointment letter yet so I guess it won't even be on time, let alone early! I'd consider a private scan - do you know roughly how much they cost? I presume I just google to find a clinic near me?

No midwife came to see me or ds when we eventually got home from hospital first time round (6 weeks after giving birth), despite the fact I would have assumed our experience should have been a big red flag for PND, and even the health visitor only did a box-ticking exercise so perhaps the mental health of mums isnt high on their priority list here!

My last dd was born with severe disabilities that weren't picked up during pregnancy. She was a very poorly girl who went through a lot in her time. We were blessed with her for 13 months before she died.

I am currently pregnant again and have had lots of scans. Each time I feel sick with nerves, waiting for them to pick up the problems they missed last time. Consequently, I've hardly acknowledged I'm pregnant. I'm 27 weeks now and haven't organised a thing.

The anxiety just eats you up, doesn't it?

HappySmileyFace Mon 21-Apr-14 10:55:39

So hard and I can totally relate (1st DC had condition not compatible with life suspected at 12 weeks and confirmed at 17 weeks). The wait was agony and scans dreadful (at one all doctors were away attending a conference off site and we had to wait 3 hours until they could get a doctor back after scan). Really feel your pain.

With subsequent pregnancies I too found it hard to accept things were ok (did not tell anyone until 20 weeks etc). What got me through was the thought that worrying would not change the outcome. Looking back I wish I had been able to believe that more than just having it as a mantra.

Sorry for everyone who has been through this (and I lurked on some of your threads cups -so sorry for your loss and hope that your pregnancy goes smoothly).

WhatAHooHa Mon 21-Apr-14 10:58:42

I'm so sorry to hear about your daughter cup. I know that we are really very lucky to have ds with us now (his condition is only picked up in the anomaly scan in about 25% of cases), I can't begin to imagine how much heartbreak you've been through. Did your anomaly scan show any problems this time around? I presume they looked harder at certain elements, given your history?

We've only told our parents so far and when I've started to raise my anxieties with them or dh they all insist on being all positive... "oh, the chances of it happening twice are so slim", "at least you know what to look for this time" etc so then I end up keeping it all to myself and like you say, it's eating me up.

I'm dreading telling everyone else and having to pretend to be excited with them... a couple of friends are a few weeks ahead of me and I know I'll have to be all happy about being pregnant together and how our babies will all be friends, as I don't want to rain on their parade. I'm jealous of how uncomplicated their joy is when mine is tainted with worry.

WhatAHooHa Mon 21-Apr-14 11:11:06

That's what dh says, happy. No point worrying as it won't make a difference, but like you, whilst I know that's true I still can't stop my feelings. So did your other pregnancies progress smoothly, bar the anxiety?

Not telling people until 20 weeks is an idea, at least then that saves me 8 or so weeks of other people telling me what great news it is before I know whether it actually is great news or not!

mrssprout Mon 21-Apr-14 11:12:22

I'm not sure quite how you cope with the waiting but I wanted to share my mums story. I was born just before my mum turned 20. I had a severe congenital heart defect that was inoperable back then & I wasn't expected to survive past 6 months. Mum was in her mid 30's before she was brave enough to try again. The scans weren't as good back then so mum didn't get her mind really settled until my sister was born, with a healthy heart. She must have coped some how as she tried again 2 years later & had another healthy girl. The majority of CHD's seem to be fairly random.I hope others can set your mind at ease, I hope it all goes well for you.

HappySmileyFace Mon 21-Apr-14 11:31:10

Yes, should have added that my subsequent 2 pregnancies were uneventful and led to beautiful (might be biased!) and healthy DCs.

I kind of felt robbed of ever being able to have a blissfully calm pregnancy though as I found it hard to quiet the internal anxiety. I wish I had been able to control it better as it ate me up at times when I could have just been enjoying the pregnancies. Healthy pregnancy or not, my worrying wasn't going to change the outcome.

My DH found me frustrating at times as he was so happy and didn't worry as much as I did. But I think you just deal with it anyway you can.

I found not telling people for a while helped me.

And I found the people doing the scans to be quite sympathetic when I explained why I was anxious.

HumphreyCobbler Mon 21-Apr-14 11:35:25

I think you just have to take one day at a time. It is very very hard. I lost my first child to Patau's syndrome, diagnosed at the 20 week scan. Subsequent scans in my next pregnancy and the following two were very hard. I too felt robbed of that state of being where you just expect things to be ok, but things were ok and I had to have faith that that would happen or I would not have tried again.

Armadale Mon 21-Apr-14 11:42:34

Hi, WhatAHooHA, you sound like you have had a horrendous time of it and I'm so glad your DS is doing well.

I found out my first DS had just died during a routine 20 week scan, and going into the 20 week scan in this pregnancy was extremely difficult for me. I nearly ran out of the waiting room I was so worked up, and was crying so much at one point the technician who writes all the measurements down told the sonographer that she felt I was too distressed and they should stop.

I think it is entirely reasonable to be incredibly anxious in your situation. My consultant told me that me being anxious was in fact a sign of mental health as it is a normal reaction to such a previous experience. Your Midwife sounds really uninformed and really unhelpful about this as you obviously are going to need help and support.

FWIW not telling people, not buying stuff for the baby and pretending to yourself you are not pregnant, or having a fatalistic attitude towards the baby's chances are all entirely, entirely normal in these circumstances.

I would urge you to be careful about private scans, there are private clinics that are absolute centres for excellence such as the Fetal Medicine Centre in London, where you would get superb treatment, and then there are private clinics where someone has literally bought a scanner and got a few minimum wage staff to use it after a couple of practices- there is absolutely no registrations or code of conduct that private clinics need to conform to and I know a couple of women who have had really horrendous experiences at them- one who was told she had miscarried when she hadn't, for example.

I think it would be better for you to get some extra support on the NHS if you possibly can. It might be worth speaking to the head of midwifery, for example, and asking what they can do to help you. They might well have specialist midwives or case loading midwives for such eventualities.

(You are quite right that such a stressful PG is a red flag for PND- at my hospital they have already suggested that the GP puts a care plan in place for what I might need, as having a very anxious pregnancy does often end in the mother needing support after the birth. TBH the after care you got last time sounds pants in this regard and it might be worth having a proactive chat with the GP later in the PG about this)

The single most useful thing that has helped me is a once a week counselling appointment with someone who specialises in pregnancy anxiety and/or pregnancy loss. It just helps to know once a week there is someone I can offload all those anxieties/negative thoughts etc to. We also practiced things like exercises I could do to calm me down in the scanning room etc.

If you are by any chance within reach of London I can recommend City Pregnancy who give free of charge counselling to women in your situation. If not, perhaps the hospital could recommend a specialist counsellor? Often hospitals have a bereavement midwife who might know of specialist pregnancy counsellors.

Good luck with the pregnancy thanks

WhatAHooHa Sun 27-Apr-14 07:20:47

Thanks for your advice Armadale, lots of good info there. I think I'm going to speak to the head of midwifery to see if I can get some additional support, or at least some extra consideration in terms of timely scans etc.

I had my 12 week scan eventually on fri - had to really push the midwife team, tears down the phone etc to get them to arrange it 'early' - although my dates showed me as being on the dot of 12 weeks! All is fine so far, which is kind of more than I expected. Heart beat, right number of arms and legs etc. So now it's just a few weeks until the big one, the anomaly scan.

Have started telling close family, and I'm seeing a few of my oldest and closest friends next weekend so it's inevitable they will realise but I think apart from that we're keeping pretty quiet until 20 weeks is up...

bakingtins Sun 27-Apr-14 08:02:39

hoohaa just sending you an Unmumsnetty ((HUG))

I have the scan doom because of 4 previous MC and though I've had lots of scans this pregnancy I've found they make me very anxious. I have a perfectly routine 35 week growth one next week and I'm anxious about that, even though all has been ok up to this point. We didn't tell people until after 20 weeks and in fact never made a big announcement, so there are still people we don't see much who don't know. It's very hard to get past the feeling of jinxing it, though I'm well aware that's bonkers. If you've had to un-tell previously, or explain there is a major issue, it becomes impossible to get that basic belief that things are ok back.
I've had lots of scans on NHS this time via the recurrent miscarriage clinic, but have paid for private scans in previous pregnancies and did private OSCAR screening (trisomy screening) at 13 weeks this time. Your local BUPA/Spire hospital is a good place to start, you'd be scanned by a consultant and the scans are very detailed. Maybe splitting the wait and having a scan at 16 weeks would make it easier to bear?

Best wishes to your DD and for everything to be well with your baby.

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