Factor V Leiden / birthing choices

[MulderitsmeX]

Hi all, so not sure how many responses I will get here as I know it's a rare disorder but would really appreciate any advice:
Stats:
Have Factor V LEIDEN hetro (ie 1 gene).
3 x miscarriages , possibly due to fvl
19+3 atm, 20 mg clexane and baby asprin daily. This seems to be doing the trick.

Currently with Queen Charlotte's in Acton.
Using their private wing an option although not too keen in case it gets £££ so would prefer NHS if possible. From my research this seems like a good hospital vs chlesea and westminster which is my other local one.

From what I've researched it seems I should not go over 40 weeks due to stillbirth risk, want to avoid epidural due to clotting risk.

My dilema
I've seen a doctor (not a consultant) who didn't really seem too responsive when I said I wanted an induction at 38 weeks, do I need to insist they refer me to a haematologist in order for this to be taken seriously? I asked if there were any medical research papers connectes to FVL thaT I could see but was told no. I understand I need to mention induction when I see doc next but what happens then - do they refer me to someone else/write it on my notes?

Is a normal obstetrician enough or should I insist to also be referred to a specialist in FVL?

If you have FVL what were you recommended? In my ideal world I go into labour naturally at week 38 and pop it out in a couple of hours (aware unrealistic!!)

Would a planned CS be safer ? (Under general anaesthetic which I've had before with no problems).

Do I need to insist upon more scans and monitoring after week 30?

I'm stressing a bit that if I don't go private and the baby dies I'll blame myself, but then if I do I'll be stressing that I'll end up with a 50k bill at the end of it!!

I'm happy with my treatment so far but want to check they are not minimising the risks I face so feel I need to be really clued up in what they should be doing. Super worried about having a stillbirth.

Thanks
Mulder

I think you definitely need a specialist. I have low thyroid and I am under the care of an obstetrician with expertise in metabolic disorders. Clotting is a factor throughout pregnancy and birth so I would definitely want specialist advice.

When are you next seeing your midwife? They can refer you to the consultant obstetric team

I have the same thing, second pregnancy. Under consultant care for it but not on clexane (was after birth) and no special birth plan. It’s a lot more common condition than you think and deemed low risk in pregnancy

I don’t know this disorder but would hope you’d not only be seeing a consultant, there would be some dialogue with a specialist too

You should be being looked after in a combined obstetric/haematology clinic. Anything less is inadequate.
Yes, your delivery should be planned and managed with haematology supervision.

I’ve got FVL (hetero) and after two miscarriages went on to have three successful pregnancies. First pregnancy (2005) I was under consultant care throughout but by the third pregnancy I had normal midwife care because they had a much better understanding of FVL. I was also worried about the stillbirth risk if I went overdue but I went into labour naturally before that point each time. As a PP said, FVL is actually pretty common. I really can’t see why you’d need haematology supervision for your delivery - the only thing you need to remember is when your last clexane injection was as this is important if you end up having an epidural or a C-section.

I’ve had four with FVL. On daily heparin injections with all. First was a week late and a forceps delivery. Second was a day early with a normal, if very quick (less than 20 min delivery). Third home birth, six hour labour, last home birth with labour timed at three minutes.
Never needed anything except the heparin during pregnancy and six weeks after. Under consultant care for all but only saw them once per pregnancy.
Didn’t worry about it at all, just got on with being pregnant and giving birth.
It really is nothing to worry about.

Gosh I'm surprised by the "no big deal" responses here. Clotting in pregnancy is a tricky risky issue that can easily be very serious and is agree with you OP that you should ask about a maternal-fetal medicine specialist or an obstetric haematologist to be consulted on your care. Properly handled, it will hopefully not impact negatively on a safe healthy delivery, whether by section or not. You sound a bit like me in your tolerance of risk and if I were you, I'd probably look for a scheduled c-section also - I say this because if epidural was not an option, then I'd never consider vaginal birth. But do ask to be referred to a specialist until you are satisfied and ask lots of questions. Above all, tell them very clearly each time how you are not happy to tolerate any risk to the baby and let this be the basis of your discussions and decision-making.

Best wishes.

Not sure how helpful this is but at UCH they have a specialist unit that looks after women who have high risk pregnancies and pregnancies following a loss. You see the same consultant usually and they’re much more understanding of your individual circumstances and likely to endorse a birth plan that works well for you and is safe. Can you check if your Hospital has a similar team? Or self refer to UCH if distance isn’t that big an issue? (Which it shouldn’t be with a planned CS or induction).

C&W have had a high number of ELCS recently have taken to sending all mums to be a letter stating they won’t approve ELCS at maternal request etc. You don’t really want to get caught up in the politics of their numbers and ratios and worry about decisions being made for the wrong reasons!

Good luck!

@mulder I hope my reply didn’t sound like I was rubbishing your concerns, I was just trying to reassure you that a lot of Leiden V women go through pregnancy without any issues. I’m off to my consultant on Wednesday so will let you know if they highlight anything (they could be stricter now as I never had injections during pregnancy first time round) but last time wasn’t offered early delivery or csection (indeed think they said the immobility associated with one could be detrimental). In the end I had GA and Emergency Section

Hi Mulder,
Obviously you have a known medical condition and so I want to be careful not to overstep the mark here - this can't be medical advice, talk to your obstetricians etc...! All the usual caveats.

However, being heterozygous for FVL really only counts as one risk factor for thrombosis in pregnancy. Most women will be on a fairly low (prophylactic) dose of low molecular weight heparin (LMWH), and sometimes only from 28 weeks, then for 6 weeks postnatally.

It is not a condition which would usually necessitate a review by a haematologist; all obstetricians should be able to manage it, although they may want to refer you to a consultant with a particular interest in it. But I would expect you to be having growth scans later in pregnancy and having the discussion about an early or at least term (40 week) induction. The best review I could find was this one which showed a non-statistically significant increase in the risk of stillbirth for hetero-FVL (http://www.ajog.org/article/S0002-9378(16)30104-1/fulltext).

It wouldn't really make sense to ask for a CS for this reason; yes, you may end up with one anyway for some other reason, or want an epidural, but at least you have a good chance of remaining more mobile with a vaginal birth. Immobility (from a spinal and in the following weeks as you recover) and major abdominal surgery will definitely both increase your risk of a thrombosis.

Finally, as you're on the prophylactic dose of LMWH, simply stopping it when you go into labour will probably be the advice, or stopping it before they break your waters if you are induced.

Hope that helps

thanks so much for all your replies everyone, I really appreciate hearing about all your different experiences.

Zaphod thanks for the info on UCH, I'm in Putney so it's not too close but not too far, I might try and see if QCH have a similar team as I'm a little nervous about getting across London in traffic to UCH but that sounds good that they really listen to your needs. I had an walk in scan with them at 5 weeks and they were fantastic, really really good and also most up to date ultrasound machines I've seen. I think I will definitely stay away from C&W as all I haven't really heard anything good about them.

Doctor Monty your post is v informative, I will look at the link you posted. Generally I agree, I don't really want a CS due to the extra risk of clotting as you said, and will definitely push for more growth scans.

electric blue no prob :) - I understand what you and others have said that it is fairly common etc just got a little worried as I suddenly wasn't sure if QCH's 'relaxed' attitude to it was that it was not a big problem or they were just trying to cut costs and are more prepared to gamble with the risks than I am.

I will definitely push harder on this and insist on contact with specialists even if only for my peace of mind.

It's really good to hear about all of your little ones especially those who have had losses as well . thanks so much for your help!

I think another thing that kind of made me concerned was because my experience at St Mary's RMC was SO good I do feel QCH docs that I've seen so far are less knowledgeable although understand they are more focused on drug treatment rather than delivery.

Just wish I could relax a bit and enjoy the journey lol!

Is st mary’s paddington close enough? I saw the mc clinic there and they are familiar with your blood condition.

Cross post! Could you return to St Mary’s (on the NHS) for your obstetric care and delivery?

Hi all

Thought I would update this in case anyone has a similar q in the future. I stayed with QCH in the end and am very happy I did so.

I was a bit more firm and got to see the consultant a few times who induced me early and DS arrived safely this month.

QCH arranged for me to see a haematologist and the consultant was very risk averse. I will definitely go back for any future DC.

(Consultants in saw were MR Lees and ms KU- bith of whom were v good).