Friday, February 20, 2015

Pregnancy after stillbirth: 13 weeks 0 days - the care plan

We had our 12 week dating scan and our first meeting with the consultant (this pregnancy), so I wanted to write up how the meeting went in the hope that it will help some others.  Reading other people's accounts would certainly have helped me.

Remember that we had no known cause for C's death and our care plan reflects this.  If you lost your baby to a genetic disorder (inherited or random), or if you had an infection, or placental problems, or an incompetent cervix, your care plan will likely be very different.  Also remember that I was 34 when I fell this time and I had a vaginal delivery with C.  If I were older, or younger, or had a cesarean, this care plan would look different.

We had the dating scan first, the sonologist was lovely, warm and friendly. I actually thought she was a nurse at first, because she had that smiling manner that I don't associate with doctors.

She let us see the screen from the start, pointed out the heartbeat, facial bones, arms, legs, etc. She measured the nuchal fold, it's in normal parameters. She confirmed it has a stomach. She let us watch it for a while. She said everything was absolutely fine, as normal.

She said the movement was normal and as she'd expect,  She dated us at 12 + 6 which matches up with the dates given at the 10 week scan and puts us a few days ahead of where I thought I was.  The dating scan can never be 100% accurate, different sonologists can measure slightly differently and it depends on what position the baby is in as to how accurate the measurements are.  The dating scan is to give a baseline to work out your due date and to make sure you are not wildly differing from the date of your last monthly period.
Then we met the consultant.  Throughout all this we were in the regular antenatal/sonology department, and there are tons and tons of pictures of new babies on the walls, and it was horrible. On the plus side, it seemed liked most women there were getting called into see consultants so I guess it was high risk Thursday. That made me feel slightly better - that we weren't the only ones in trouble I mean.

Then we saw the consultant, he had another doctor with him, one of his team, she was OK. Good enough. The consultant briefly discussed what we agreed upon at the last meeting, e.g. more scans and I could labour or a c-section. He checked my file and said all was normal. I can't really remember the exact details of this part because he then said something about did we have any questions and I pulled out my A4 sheet and said, oh yes I have a lot of questions. So the rest of this post is my write up of what he said.

General questions:
Who do we ring at each stage if we think there is a problem? - Pre 22 weeks, ring the midwife. 22 weeks plus, ring the delivery suite.  No one can do anything to help the baby if it's under 22 weeks gestation.  So now it's just a waiting game.  I feel a bit relieved by this, like the pressure is off.

Is it worth taking aspirin? - Current research is that aspirin doesn’t do any harm, but there’s not much evidence to say it has a positive effect. For that reason he doesn’t prescribe them. I had no placental or umbilical cord problems so there is no need for me to take them.

Am I at lower risk of pre-eclampsia, placental problems and an incompetent cervix? Yes to all. Well, I didn't ask about the cervix because I felt a bit silly and was having trouble getting my words out. I'm def lower risk for placental problems and pre-eclampsia though.

Perma thrush results - Remember how a few posts ago I was whinging about my unidentifiable muff itching?  4 GP prescriptions for thrush and one swab later and it's still there. So the consultant and his doc checked the swab results and confirmed everything came back normal. The doc checked me and couldn’t see anything,  She thinks it is the scar healing (I got a second degree tear in labour). She ignored me saying it itched in my last few weeks of pregnancy and before I even got pregnant first time. So I don't think it's the scar healing, but I also think it's just something I have to put up with. So long as it's not an infection I can cope.

Can I have a test to see if I am immune to Toxoplasmosis? - This is not available on the NHS. I suspect this means our NHS trust doesn't offer it. Anyway, 50% of people who grew up with cats are immune to toxoplasmosis. If blood tests show women have the virus, this does not mean it will infect the baby, if it does infect the baby there is no way to tell what effect it will have, if any at all. So they don't offer the tests as they can unnecessarily women.  I'm happy with this, I think I'm fairly low risk and I always wash my hands after being around cats.

I was going to ask 'what does the consultant do?, 'what is he responsible for as opposed to the midwife? and 'what are the warning signs or problems in pregnancy?', but I decided not to. I know who to call if I'm having problems and I know I'll only see the consultant after scans.  I'll be thinking every little twinge is something going wrong so I'm best off just calling the midwife.

I am also going to pluck up the courage to read bits of the hated What to Expect book again.  This book is great, if your pregnancy is low risk, remains low risk and you get a live healthy baby.  If it all goes wrong without any warning it's too late to read the ENTIRELY SEPARATE section on problems in pregnancy. This section should be incorporated into the rest of the book, because how many expectant parents will anticipate they might need this section.

Scans and appointments:
What will they check for at each appointment? Heart rate, amniotic fluid levels, growth (every 2 weeks - any more often than that and it’s not reliable), blood flow through the umbilical cord at 20 weeks and from 28 weeks, organs etc at the 20 week anomaly scan. CTG monitoring will be used when I come in for emergency scans - where they measure heart rate against movement.

Will we meet the consultant after each scan? - We will meet him or one of his team. he can't guarantee to be working every time we have a scan.

Are the scans going to be doppler scans? Yes.

Will the scans check for growth, heart rate and blood flow? Yes

I want scans at 20, 24, 28, 32, 34, 36 weeks. What if I want more scans later on? Scans are now arranged for 20, 24, 28, 32, 35, 37 weeks. I can ask for more if I want them later on, but there’s no point having them more frequently than fortnightly as they can’t tell much if they are more often.

Are there any risks to ultrasounds? Not as far as they know.

We decided against a 16 week scan, as the Early Pregnancy Unit sonologist confirmed they can’t pick up all problems at 16 weeks, these are picked up at 20 weeks, and if they do pick up a problem there is nothing we can do. So I don't want a 16 week scan - I'll have weekly heartbeat checks by the midwife from 14 and a half weeks and that will do me.

Third trimester:
How do steroid injections to develop the lungs work? When do I need to take them? What are the risks? Steroid injections won’t be given later than 35 weeks if I intend to labour. If I decide on a c-section they can be given up to 37 weeks.

Can I meet the midwives before delivery -The consultant will check if this is possible at the 35 week scan as the rotas will be arranged then. This has not been requested before but he doesn't see why it can't be arranged, provided the right midwives are around.

What is current movement advice? Consultants say if there’s any change ring them - they follow RCOG guidelines. I told them community midwives and delivery suite say 12 movements a day is normal and expected and if that's wrong (it is) they they need to get the community midwives to stop giving out that advice. I said if I'd known the guidance was to worry when movement changed I'd have gone in the day before, or the day before that. The consultant said he'd speak to the head midwife about changing the advice.

That was the hardest part of the meeting - telling them I think their advice is shoddy and implying that my son could have been saved if they gave out correct advice. I feel awful.  Not because I feel bad for how they'd take it, but because it brings up all sorts of awful memories and emotions for me, mostly retaining to it being my fault C died.  The fact was every. single. midwife, I saw, whether that was the community midwives at my regular antenatal appointments, the 2 that delivered the ante-natal classes, and the midwives on the delivery suite who I rang when I was concerned about movements earlier in the pregnancy said:

If you are worried about changes in movement, ring us, but we only expect you to feel 12 movements a day.
This advice was given out even when it was raised that I usually felt more 60, or 80 movements, so if it dropped to 12 wasn't that a problem.  I was told no.
I'm not holding any one midwife to account here - I adore my regular midwife, she was great.  I'm sure the full midwifery team was giving out this advice with a clear conscience and that they believed it to be right.  I'm angry at the training they are given and I am angry that the consultant team gives out different advice, because by the time you see the consultant team it's too bloody late.

Can I have test for group b strep test at 35 weeks? I think they said the blood test is not available on the NHS, again I suspect this means is not available from this NHS trust. However if I go to the GP and ask for a vaginal swab to be taken at 35 weeks because I am itching, they will test for Group B Strep and everything else as standard, as I am pregnant.

What other tests are available? None that are recommended. The diabetes test at 28 weeks is always done for women in my position.

I want the heartrate to be monitored, can I move around while this happens? They can monitor with a battery operated thing, or use something plugged into the wall which will give me some freedom of movement.

How are they going to monitor me and the baby? The baby’s heartrate will be monitored throughout labour by the above described machines.

They want to induce me between 37 and 38 weeks. I want to be induced at bang on 37 weeks. They will use the scans to determine the health and size of the baby and work out when is best to deliver. I confirmed I want to labour, not have a c-section.

I also wanted to ask these questions but decided they would be best off being brought up closer to the time:
What are the warning signs or problems in labour?
Will I have a machine to measure both heartbeats and antibiotics to stop any infections?
When is the earliest I can deliver - I want 36 to 37 weeks. Talk me through the risks and complications.
Will the consultant be there at labour?
Who else will be there at labour, what can I expect, labour wise? I mean for duration, pain relief, tearing etc.

After care
I will also ask these questions closer to the time:
Can the consultant paediatrician to do initial checks, can I have daily home visits by the midwife for the first 10 days
What are the after birth checks?
Can I have blood cultures/swabs taken at birth to test for infections?

I'm happy with my care plan. It's as thorough as it can be.  I'm happy for people to ask questions although I will not tolerate anything rude, judgmental or abusive.

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