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Haemophilia carrier pregnancy

(21 Posts)
Johno85 Sat 05-Nov-16 07:47:15

Hi. I saw a very old thread similar this this but nothing recent. I've just gotten my bfp and have known since 15 that I am a haemophilia A carrier. My dad has the milder version and it's never really held him back his whole life. To look at him you wouldn't even know. I just wondered if there are any other pregnant ladies out there who are known carriers, or those who are carriers and have had children. I've done a lot of reading up but was interested in how their pregnancies progressed and the tests they had done for gender and haemophilia sufferer/carrier status. Assume I will have to be consultant led and have little one in our local hospital which is linked to a haemophilia centre. Any info or advice would be great. Thanks x

kilesu Sat 31-Dec-16 01:47:59

Hi Johno85, I don't know if you are still looking for info on this but I am in a similar position to you. I am 36 weeks pregnant now, have known I am a carrier of haemophilia A for as long as I can remember, but only found out a few weeks before I got pregnant that I have low levels of factor viii myself (30% of normal).

Let me know if you are still looking for info and I will tell you what has happened to me so far in pregnancy!

Lorann86 Sat 31-Dec-16 16:06:36

Not a (know) carrier myself but my partner has haemophilia and I know if we find out my baby is a girl she will likely be a carrier. Quite interested to see what your journey is so placemarking. I have been referred to the haemotology clinic and not really sure what to expect myself there as a non carrier. Expecting just abit of information really.

Congratulations both smile

kilesu Sat 31-Dec-16 16:59:27

Congrats Lorann! I think my pregnancy has been slightly less complicated in some ways as we know the baby is a girl, but more complicated in others as I have low factor viii levels myself. Obviously you shouldn't have the issues I have personally had from my own perspective given you're not a carrier so I'll just tell you what happened in terms of the baby.

One of the most important things in my case was for them to find out the sex of the baby (given there was a 50% chance a son of mine would have haemophilia and a 50% chance that a daughter would be a carrier). I actually had a CVS for unrelated reasons, and we found out from that the baby was female. But they mentioned that had I not had a CVS, they would have probably done a blood test or something to find out. They didn't do any other testing on the baby. As the baby is a girl, there aren't that many specific considerations like there would be for the birth if she were a boy. I have been told that most interventions etc would be allowed with the exception of high rotational delivery using forceps if the baby is in the wrong position (which is annoying in my case as she is currently back-to-back!). This is just in case the baby does turn out to be a carrier with lower than normal factor viii levels. Most carriers do have normal levels though, I was just unfortunate.

I'm not sure if it would be the same in your case as it depends on your area and what their policies are, but just to give you an idea what happened in my case! Good luck!

And in terms of being a carrier, I really haven't found it has affected my life particularly. I mean, I didn't even know I had low levels myself until recently and have managed perfectly fine. Do you know how badly your partner has it? The version that runs in my family is mild-moderate.

Johno85 Sat 31-Dec-16 16:59:50

Ah finally I have some company! Hi to both of you. Wow kilesu not long for you to go. I'd be very interested to hear about your experience during pregnancy. I had my 12 week scan this week and have been put forward so am no 13+1. I have chased the midwife this week as I'm yet to hear from haematology.

I've always known I've had lower factor 8 (not quite sure of the %) but have had major knee surgery with no problems. Just generally bruise like a peach lol.

Would love to have the option of a normal delivery but assuming I will have to stay consultant lead.

Hit me with the details smile x

Johno85 Sat 31-Dec-16 17:00:58

Wow you were writing at the same time as me- I'll have a read now x

Johno85 Sat 31-Dec-16 17:04:05

Ah that's a great amount of info, was wondering whether you knew he gender of your little one. Did they recommend 100% that you should find out the gender? I've read similar things to you about assisted delivery. I also read something about the vitamin k injection after delivery. I just want to have my haematology apt now so I can crack on with whatever i need to do. My gut feeling tells me it's a boy though!

Lorann86 Sat 31-Dec-16 17:11:56

Thanks Kilesu, thats really helpful.

My partner is factor viiii so a little more rare and is a severe sufferer but deals with it very well, his mum is a carrier and has low clotting herself so im guessing its a strong gene they have!

I will be discussing delivery options soon, Im guessing they will cover that at the haemotology appointment. We had already planned to find out the sex aswell, Ive been worrying abit if baby is a girl so very happy to hear it hasnt really had an effect on you.

Johno, I was only referred after speaking to a consulant after my 12 week Scan so maybe you will hear something soon. Both my 20 week Scan and the haemotology appointment are at the end of January but I will keep you updated!

Thanks both for sharing smile

kilesu Sat 31-Dec-16 19:23:42

Hi both,

It's nice to have other people out there in a similar boat!

Johno, in terms of what happened with me personally - I was being seen by my local haemophilia centre anyway (just general discussions about what would happen if I got pregnant) so when I found out that I was pregnant, they booked me in for blood tests at around 30 weeks to see if my levels had gone up like they usually do in pregnancy. I didn't really have any contact with them between those two appts aside from I phoned them up to ask if any treatment was necessary before my CVS (it was - IV tranexamic acid before then orally for a week after). My blood test at 30 weeks showed my levels had gone up to 63%, which they considered sufficient for me to give birth locally rather than at the hospital with the haemophilia centre. If they hadn't gone above 50% they would have wanted me to give birth at their hospital. They have given me a list of things to go into my birth plan (essentially oral tranexamic acid as soon as I'm in active labour then for a month after giving birth, IV tranexamic acid if I need an epidural / caesarean, a managed third stage of labour and a pessary afterwards to keep the uterus contracted to limit bleeding). I've been consultant-led throughout but haven't really had any issues relating to the haemophilia. I didn't bleed at all after the CVS and haven't really particularly had any random bleeding at any other time (although I did bleed quite a bit after a cervical examination with a speculum).

In terms of the sex, they definitely wanted to know themselves due to the extra considerations necessary for the baby if it was a boy. I did read somewhere that sometimes they will find out themselves but keep it from you if that's what you want. My consultant said that as the baby is a girl, vitamin K injections are fine. But I think with boys they sometimes prefer it to be given orally.

Anyway, sorry for the life story but I thought it was worth getting down as there isn't a lot of info out there in terms of people's actual experiences!

Good luck to you both for your next appointments!

Johno85 Sun 01-Jan-17 18:45:23

Thanks for all the info. Will keep this post updated as and when I get the info. The only thing I could find when googling was about genetic counselling in case you decided not to have a baby due to haemophilia; talk about a kick in the teeth. That would never have affected my choice.

kilesu Tue 03-Jan-17 18:54:23

I know - same here. We had a CVS but opted not to find out whether the baby had the gene or not (we had much bigger concerns at the time anyway) as it would never have affected our decision.

I too will keep the thread updated with what happens during labour and afterwards, so hopefully over the next few weeks!

Johno85 Thu 12-Jan-17 21:24:08

Hi ladies. How are you doing? Just to let you know my Harmony test results came back as low risk at 1 in 10,000. We also found out we're having a little boy. Time for things to get interesting! Am going to call fetal medicine tomorrow to let them know.

Lorann86 Wed 25-Jan-17 15:29:32

Hi ladies,

Hope all is well. Found out we are having a little girl and so she will be a carrier.

Had the meeting with haemotology consulant today and they said because of my OH mum having low factor as a carrier we will probably take the same precautions as if she were a boy. So no scalp monitor, forceps etc. They have to double check all of this with a senior consulant and get back to me, hopefully tomorrow.

I hope your hospital clinics are better than mine. 2 hours late for an appointment sad not good at lunchtime lol

kilesu Wed 25-Jan-17 19:46:40

Hi ladies, sorry for the late reply.

Johno, have you had your appointment yet? I guess things are a little more complicated with the baby being a boy but at least you know well in advance!

That's interesting Lorann - I guess it's a different type of haemophilia but I was told the odds of our baby having low levels are no higher than usual despite my levels being low. So they have said most things are allowed apart from rotational forceps.

Let me know how you both get on.

It's my due date today but no sign of the baby!

Johno85 Sat 04-Feb-17 08:10:09

Hello all. Just an update. Had my appointment with haematology and fetal medicine. They have tested my husband and I for NAIT (as my sister had it in two of her pregnancies) so we have to rule that out as NAIT and haemophilia will prove a challenging mix.

Blood results should come back Monday. If 50% or above chance of NAIT will have amnio soon to check for this and haemophilia status. If no NAIT will wait to have an amnio at 36 weeks as they definitely want to know about the haemophilia status before labour.

If he is a haemophiliac they want to discuss a planned c-section as an option (sad face). If he's not a haemophiliac I can carry on as "normal". Definitely not allowed to be midwife lead at all so will be giving birth at St Michael's in Bristol.

kilesu Sat 04-Feb-17 08:35:50

Johno, I had no idea what NAIT was but I just looked it up and it does sound like a challenging mix. Good luck for your results on Monday. That was something I was concerned about before finding out the baby's sex - the possibility of a planned c-section if he was a boy and did have haemophilia.

Where are you based if you don't mind me asking? Not just being nosy - I'm from South Wales originally and planning to move back there or the Bath area after my baby is born. Depending on where we live, either Bristol or Cardiff would be our nearest big hospital so I'd probably end up giving birth in one of those areas next time. Currently I have my haemophilia care at the Royal Free in London.

As for me, I'm now 41+3 and still pregnant. Being induced on Monday if nothing happens by then... it kind of freaks me out as I know it makes epidural / interventions more likely and both can be riskier where haemophilia is concerned so I was hoping to avoid them.

Johno85 Sat 04-Feb-17 10:15:52

Hey kilesu. Wow you must be ready to meet little one!!! The consultant seems confident that I won't have NAIT as my sister is technically my half sister so gene mix is different. I'm in Bristol so will be at st Michael's hospital. They are linked to the haemophilia centre which my dad has had excellent care from x

kilesu Sat 04-Feb-17 10:49:46

So ready!

Well that's hopefully one less thing for you to worry about then.

My Dad always had his care at Cardiff and was really happy with it (he's actually no longer a haemophiliac as he had a liver transplant!). The Royal Free seem good but a bit disorganised in terms of appointments / paperwork.

Johno85 Tue 07-Feb-17 08:25:53

Kilesu, how you getting on lovely? We had our blood results yesterday and they are negative for NAIT which is great news. Means there's no chance in any further pregnancies. My factor 8 level was also 70% which is great. So now just carry on as normal until amnio for haemophilia status at 36 weeks x

ApollO88 Tue 07-Feb-17 08:59:06

I'm a sufferer of haemophilia c factor xi. I was told throughout my pregnancy that I would be allowed an epidural by my consult. Come birthdate I was refused one at the hospital. They told me my notes said I was not to have one. Turns out they just didn't have the specialist on site whilst I laboured at night time. Anywho. I gave birth to a beautiful DS. They sent away the cord blood to see if he also suffered. Tests came back inconclusive. Fast forward 5 years and we finally got the doctors to agree to test him. We received his negative result 2 months ago. We do not plan to have anymore children and as he doesn't suffer I hope that my condition will now end with me.

kilesu Fri 24-Mar-17 13:47:37

Sorry, time got away from me and I never replied to this! That's great news Johno on both counts. Let us know how you get on with the amnio when it happens.

Hi Apollo, that's so bad that they didn't let you have the epidural. I'm glad your son isn't a sufferer though.

Well I ended up giving birth on 7th Feb after an induction, a long, difficult labour and an emergency c-section. I think everything was managed quite well in terms of the haemophilia - I received my tranexamic acid before my epidural as planned. The syntocinon drip was causing the baby to go into distress but nothing was happening without it - they didn't want to risk an overly long labour due to my increased bleeding risk, which was why I ended up with the caesarean. I did bleed a bit more than usual during the operation so ended up mildly anaemic for a bit, but then my bleeding afterwards wasn't too bad (although I did randomly start bleeding again yesterday at 6 weeks and I'm pretty sure it isn't a period as I'm exclusively breastfeeding). The only thing I was disappointed with was some of the care on the ward afterwards. I ended up staying in for 4 nights due to a suspected infection, and one of the midwives took away my tranexamic acid and refused to give it back until a doctor had cleared me to take it. But the labour ward was really busy which meant I ended up going without it for 24 hours just a few days after giving birth. I was annoyed as I had a prescription and a letter from my haemophilia centre, and the local obstetric consultant had also cleared me to take it.

Ah well, it all turned out okay and I now have a 6 week old baby girl to show for it! I hope you all keep me posted on how things turn out with you x

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