Seeing a consultant

[Topsy34]

Its a bit of a long story but just wondering if anyone is in the same boat, or have heard of this.

My cmw persuaded me to have the Downs screening, I wasnt keen and asked for more info, she said i would be able to speak to someone on the day i had the scan about it.

I turned up for the scan and blood test, to be told your mw should have spoken to you about it, you've saaid on the form you want it.

Agreed to have it, and then a few days later had a call from the screening mw to say they 'dont like the look of my hcg' then went on to tll me normally they bring you in at 30 weeks, start steroids, then give you a caesarean at 32 weeks and then take the baby in to NICU and feed it special formula.

When i said that I would listen to the options, but am having a homebirth, she then said, oh yes some people can have a home birth, it just depends.

Anyway, they have booked me to see a consultant tomorrow as apparently there is a link between high HCG and high BP in late pregnancy.

Im feeling so angry they tested for something i didnt consent for and now am under pressure and stress, and know i will have a fight on my hands to prevent them butchering me. DH and i arent talking, he thinks i should do what they are telling me.

So what can i expect from this appointment, I have alot of research done about the link, which seems a bit tenuous. Ive been unable to find any actual numbers of women, just p values.

[Skiptonlass]

Take a notebook. It's very easy to get upset or defensive at these appointments and forget to ask what you need. Having questions written down will increase your control.

You want to be asking:

Can you explain more about this to me ? ( quite a general one but it sets the stage, don't be afraid to break in and say "ok so do I understand correctly that x , y and z are the case? Etc)

I'm obviously upset about this. What's the evidence for this approach ?

What happens during this approach?

What happens if we manage expectantly? Can we have expectant management where we wait and see what happens with my blood pressure?

What further tests will you do?

How many women a year do you see with this issue? What choices do they make? What are their outcomes?

What are the relative risks of doing this at 32 weeks versus expectant management (a wait and see approach)

What sources of information and support can you point me to ?

I'm sure others can help you think if some more, but I find knowledge is power. I hope it all works out well for you.

[Topsy34]

Thanks.

I Think what i am most upset about is the lady who phoned me completley changed her tune once i said that NICE guideline in fact say that women should be offered the information, rather than how she put it - we will do this we will do that.

The links i have found are anecdotal and, whilst im not denying there ia a link, i think its terrible that firstly they tested for somthing i wasnt aware of but secondly implying that i will get high bp and i will HAVE to do all this stuff.

[mummyneedinganswers]

Topsy I filled out a form and signed it at my booking scan allowing for the down syndrome test but the page I signed also said if they find any abnormalities they will tell me so I think they test for a wide range of problems not justddown syndrome, I think if that's the same form that you filled out it does state that they will tell you of any thing they find.

[Teeste]

I am by no means any kind of expert, but I have just been through the high BP thing at 35/36 weeks. My BP was measuring at 'mild hypertension' levels (between 140/90 and 150/100), I was admitted to the antenatal ward for 2 days and had my BP read every 4 hours. I was released back into the wild on labetalol (BP meds) and under twice weekly supervision (so far). So I would wonder if there aren't other options for managing high BP aside from a CS. Is it pre-eclampsia they're worried about? I think Skiptonlass's suggestions are excellent, you need much more and much clearer information on this.

And yes, they have a whole battery of tests they run as standard on bloods and urine that they don't tell you about. I had no idea they were testing me for group B strep, but they did and found I had it. It was a hell of a shock, but it's still better to know so they can treat it. Ditto iron levels.

I've also found that consultants tend to tell you what will happen rather than offer you a choice. For instance, I've been told I'm having a sweep at 40 weeks and an induction at 41, instead of being offered them. I've also heard midwives saying you need to be assertive and to ask for what you want. IME, this does lead to some disapproving looks and tones, but it's your body and your pregnancy. They can't force you. OTOH, they're the experts. It's a fine line to walk!

[Topsy34]

I specifically asked my mw what was involved in the downs testing and what was looked at and she said a simple blood that only looks for the downs markers. I said that i wasnt sure if i wanted downs screening, and the form has 3 options, yes no or not sure. My mw told me i HAD to tick yes or no and that i couldnt make a decision later because i wanted to talk it through with the other half

They didnt give me a screening booklet either, despite me asking for it.

The thing that aggrivates me the most is there is NO conclusive evidence that high hcg WILL lead to high bp/ preeclampsia and that the reaction is completely OTT

Becuase of this I am seriously conisdering changing mw and not allowing anymore blood tests, i just think its really really bad they test you for stuff that you havent agreed to.

I

[mummyneedinganswers]

Tipsy in your booking scan you would have been asked to sign things for tests etc that aren't carried out until later in pregnancy but its done, they test you for stuff to protect you and your baby, you have the right to refuse but if anything happens its will fall upon yourself as you went against the professionals. In my mind anything they can do to protect me and my baby and if there is a problem then I would trust them to make the right call on what to do. I've had 4 miscarriages before this pregnancy and I want them to do what ever they can to ensure my baby is fine and there is no complications look in your maternity file there is a page in mine where it says everything I have been tested for sofar

[ShadowFire]

I thought they tested levels of beta hcg (and other hormones) as part of the Downs screening because there's correlations between hormone levels and risk of baby having Downs Syndrome? Not an expert though so I might be muddled about that.

Regardless, if the tests have picked up a potential problem, surely it's best to see the consultant and get all the information you can?

Maybe take a notepad to the appointment to write down info about risks and how they propose to manage the pregnancy, and a friend / relative to listen as well in case you can't remember everything said.

I hope the rest of yous pregnancy goes well.

[Topsy34]

Yes there is a link between hcg and downs, however no where in nhs screening does it mention they will check the hcg and compare it to other things.

I dont actually think its right that they are testing for other things. I havent signed for any other testing in my pregnancy and feel aggrieved that i had asked for more info but the mw would not allow me to tick the more info box and said i had to choose between yes and no.

If i had chosen no there wouldnt be an issue....i feel really pushed into things when i dont want it.

But how is it potential problem when all the studies only have anecdotal evidence and no conculsive proof, and of course my bp is going to be hgiher due to stress!!

I wont be accepting any further testing or proposals from the hospital, i just cant trust them

[ShadowFire]

Topsy I understand that you're upset about the extent of the testing not being explained to you.

But I would advise against rejecting all proposed testing and treatment. If you do that, there's a risk that any problems that may develop with your pregnancy won't be detected, and that could have tragic consequences if you get unlucky.

Demand that they fully explain in advance why they're doing tests, demand that they fully explain what they're testing for, demand that they explain all the risks of tests / treatment and the risks of not having the recommended tests / treatment so you can make an informed decision about whether to consent - but please don't make an impulsive decision to refuse any further testing / treatment just because you're angry about this.

[WillowB]

I agree with Shadowfire.
Be careful about cutting off your noise to spite your face. At the end of the day they are doing this to hopefully achieve the best possible outcome for you and your baby. I say this as someone who had a very difficult first pg with little support from the midwives & consultants. My son has long term health problems which could possibly have been prevented if I'd been monitored more closely.
I'm pregnant again and this time I am considered high risk. I'm taking all the monitoring that I am offered.

[CommanderShepard]

I agree with Willow and Shadow, and I understand the combined test to work the same way as Shadow does.

I understand why you're angry but please don't cut off your nose to spite your face - among many other things pre-eclampsia really isn't a walk in the park and having had it myself to be honest I think the earlier they can spot it the better.

Which hospital are you under?

[Topsy34]

Im west berks, but under great western swindon.

No i will see the consultant but having researched it over the past week, it seems second trimester hcg points to preeclampsia/high bp, but my screening was actually first trimester.....

its more the fact that its assumed by everyone that i would be grateful to know that there is a plethora of people so eager to interfere with my pregnancy, without a second to actually ask ME how i feel about the intervention and interference.

The intervention rates have been soaring at GWH, and it really bothers me that they are so keen to get a caesarean done and dusted so early. Recently they secured a huge amount of money as the 'high risk' pregnancies are soaring.....

I spoke to the screening mw again today, because i felt i needed to ask more questions and when i said about the research i have done she said, that in all honesty my pregnancy is not high risk, they would consider it an intermiate/low risk, and that the consultant is is keen to see anyone with high hcg. Which now makes me think thereis some ulterior motive like studies or what she wants for a research paper. i just don't understand why she would call me last week and say that my pregnancy is extremely high risk and that i would 'have to have a caesarean and would definatley have a prem' to today ' oh yes, absolutley a many women with high bp have a home birth'

Why would they do that to someone?!?

[Skiptonlass]

I agree with the pps who say don't refuse further testing. What you need is a little readjustment of the power balance. Right now you feel powerless, and that's not good. The medical staff should be working with you - accommodating your wishes if reasonable, and VERY clearly explaining to you if there's a reason why their plan contradicts yours (as it may, which is fine, if there's a valid medical reason and if they explain it to you properly.)

This CAN work in your favour - you just need to make sure you have the knowledge you need and you remain in control. The concept of informed consent is really important in my area of work. It's vital that patients consent (or not!) with ALL the information. They must not be dictated to. If a doctor is found to have done that in one of our trials, there's hell to pay! I work in clinical trials and the informed consent forms we have must be written in clear language that the average layperson can understand.

High bp can be very dangerous - there's no doubt about that, and you would be well advised to have it monitored (most of us do.) however, right now you don't have high bp. You have one possible risk factor for high bp. And high bp, if that's your only issue, can be effectively treated with things like Labelotol. I see no clinical reason why high hcg should automatically put you on a path to such an early section. That's what you need explained to you. Ask:

"Right now I have high hcg, yes? Ok, I understand that. However, it's a risk factor. I do not currently have high bp. If I did develop high bp and if that was the only issue, I don't understand why I'd automatically need an early section. Can you explain that to me please? Why wouldn't you treat with an anti hypertensive and wait to see if that controlled it? "

And If it was me (and I'm cheeky as, and a scientist, and well able to stand my ground with consultants, I work with loads of them, mainly lovely, a few god complex types) I'd look them up on pubmed and see if they were doing any research ;) I'd then add the following to my list above :

"I see you're doing some work in this field... Are you recruiting subjects? I'd personally prefer an expectant management approach. However, if you show me the informed consent forms for your study and explain your methodology I will certainly take that home with me and have a think."

Then you should have more info.

good luck. Try and get that power balance shifted a little and I think you'll be much happier with the outcome.

[Topsy34]

Update!

So i went to the hospital to see the consultant and decided that i would decline bp and urine tests before the consultant appointment as i knew my bp would be raised because of the anxiety and stress. Im glad I did as it back footed them a little and I felt more in control.

There was a consultant and midwife there.

I expressed my anxiety and the stress i was put under worrying, i demanded the studies, of which the consultant didnt know, i then said like skipton lass suggested 'this is my understanding....' To which they agreed that there is no evidence that i will get high bp and there is no reason to induce/caesarean.

It got quite heated as they just kept saying the evidnece says.... Without actaully backing it uo with the said evidence. They couldn't give me the actual numbers of women who have high hcg and then develop high bp.

They then went to get the screening mw who i spoke to originally and she was so much better at understanding that i wanted my pregnancy to stay intervention free and that i felt all my decisions were already mapped out and no one had stopped to ask me what i thought or felt. I could see the first mw was irritated that i was questioning everything and that i had refused bp, the screening mw stepped in and actually agreed with me when i said that a bp in this circumstance would not be beneficial.

Anyway we were in there an hour and i the consultant wouldnt/couldnt answer any of my questions, she just avoided them.

The first midwife said i will book and appointment for 22 weeks, and i just looked at her, the screening midwife, said, no why dont you ask her is she would like to see the consultant again, as there is no medical reason for it, i said no i wouldnt, the screening mw said that i could see her after my anomaly scan if I decide to go ahead, and then discuss further scans, they want to scan me monthly from 28 weeks, i just cant see the point of making these decisions now, when there isn't an actual reason to do so, she agreed that seeing my community mw more regularly for palpation and bp would be a good idea if i decide against further scans. I am completely undecided on further scanning and will wait until 28+ to make that decision. She did indicate that at the 20 week scan they woukd measure the baby and then i could have the belly measurements with community mw and then opt for a growth scan at 28/32/36/40 weeks if i wanted.

I agreed to see her again and that i would continue community mw care. And i would decide on blood tests as i go, if the mw can tell me exactly what it tests for and that i can decline parts of that blood testing if i choose

After the screening mw asked if we wanted to continue our conversation and i said yes, we spoke for another 15 minutes away from the consultant and first mw and she asked me about my first pg, my miscarriage and how i was feeling now. She apologised. That her phone call uoset me so much and realised as our phone conversation continued that I had no idea that this test was even being done.

She agreed with me when i said that i think their literature for screening should have a little bit about a high hcg can indicate the potential of a risk of high bp and will be checked during downs testing.

Anyway, long post, sorry!

[PatsyNoPasta]

Well done OP. I'm glad you took control of the consultation. Some MW and doctors are so used to just telling women what to do, (informed consent - haha!) it must come as a shock to speak to someone that knows their own mind and wants control over their body! It's interesting that the consultant couldn't provide any evidence to support her case. I bet the two MW had words after you left Good luck with your pregnancy.

[Topsy34]

Thanks! It was quite amusing to see their faces when i said no to urine and bp

The screening mw was much more knowledgeable and helpful, i think the mw and consultant just couldnt understand my view of wanting all the info and waiting and seeing if something actually happens.

I sadi if my bp increases i would be willing to take Labeletol to control my bp, they both just stared, as i think they were surprised I knew the drug. I asked about taking aspirin for the rest of my pregnancy as its indicated as a benefit if there is risk of high bp, she was clueless!

So i am chilling tonight, might go for a swim in a bit and Ive just booked my hypnobirthing course, only positivity from here on in ??