Advice needed C4M2 and NHS consultant

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Rockangel
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Joined: Tue Jul 26, 2016 8:57 pm
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Advice needed C4M2 and NHS consultant

#1 Post by Rockangel » Wed Jan 24, 2018 10:48 pm

Hi everyone,
I'm wondering if anyone can offer any advice.

So I'm happily recently pregnant from a cycle with the brilliant team at Nottingham.
I have mutated C4M2 so am taking Calcium and Clexane daily and was treated for raised NK cells.
Since being discharged from Care I have been waiting for my Consultant appointment in the hope I would get a bit more info and support and hopefully and understanding into the risks I could/may/don't have with the ongoing pregnancy. But when I saw my consultant the meeting started by them telling me they had never heard of my condition and had no idea what we needed to do.

So now Im really concerned. I don't know if I'm going to get the right support or not. I don't even know if I need anything or not because no one can tell me. I could just assume that the rest of the pregnancy is as normal as anyone else but I'm worried that we might be missing something that could put baby at risk. I can't relax worrying about it. There could be nothing to worry about but I need someone who has that knowledge to tell me.

Does anyone know if its possible to get a consultant on the NHS with infertility experience and how I should go about asking for this?
Or does anyone have similar condition and have any experience they can offer? Is this pregnancy just like anyone elses now I'm past 12 weeks, should I be aware of anything else that the NHS should be doing? If I have to i'll go private but I don't really know where to start with that either.
Any help or support is appreciated.
Angie

ME 36, OH 42
May 16 - Ectopic Tube removed
Feb 16 - Ectopic Methotrexate
July 16 - 1st IVF Cycle 1 Embie 6 Frosties - BFP EDD 10/4/17 - mc 18/9/16 10w6d
Dec 16 & Mar 17 - Fronzen Transfer BFN
Oct 17 - BFP EDD 20/7/18

wanda
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Re: Advice needed C4M2 and NHS consultant

#2 Post by wanda » Thu Feb 01, 2018 4:26 pm

Hi hope you dont mind me replying. Best thing to do is contact the CARE clinic and let them know. A summary of your treatment and any medications you need to take will be sent on to your GP and your obstetrician can also have a copy. Sometimes the tests in IVF are not universally known about or understood when it comes to ante-natal appointments so make sure you have copies of your discharge letters from CARE. Probably a good idea to talk to one of the CARE secretaries - this situation does crop up now and again. There are obstetricians who are also fertility trained as well, your GP should be able to advise. If you are on any meds just continue as the IVF doctors have told you - and if you have any queries please contact the team at CARE. We will be happy to help at this important time. Lots of love and good luck with the coming months, best wishes Wanda, CARE.

Rockangel
Posts: 27
Joined: Tue Jul 26, 2016 8:57 pm
Location: United Kingdom
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Re: Advice needed C4M2 and NHS consultant

#3 Post by Rockangel » Thu Feb 01, 2018 8:21 pm

Thanks Wanda.
I have done this and another letter has been sent to my GP. My concern is that it states that the decision is up to my Obstetrician but they are not knowledgeable enough to make the decision and that worries me. What will they base their decision on? I did explain this to the secretary I spoke to but the letter still came through with the same statement.
Angie

ME 36, OH 42
May 16 - Ectopic Tube removed
Feb 16 - Ectopic Methotrexate
July 16 - 1st IVF Cycle 1 Embie 6 Frosties - BFP EDD 10/4/17 - mc 18/9/16 10w6d
Dec 16 & Mar 17 - Fronzen Transfer BFN
Oct 17 - BFP EDD 20/7/18

Sophiejones14
Posts: 3
Joined: Sun Jan 07, 2018 10:14 pm

Re: Advice needed C4M2 and NHS consultant

#4 Post by Sophiejones14 » Wed Aug 01, 2018 9:14 pm

I appreciate this is a late reply but I am having the exact same problem now. I took have the C4M2 gene and on Clexane throughout pregnancy and for 6 weeks after. When I told my midwife she had no idea what it was and really worried me when she started asking what I was going to do about delivery - when I had no idea!
Did you get anywhere with your consultant? I have asked to be referred to someone but I worry they won't really know either as like you my letter from CARE just says to follow their usual hospital protocol!

Rockangel
Posts: 27
Joined: Tue Jul 26, 2016 8:57 pm
Location: United Kingdom
Contact:

Re: Advice needed C4M2 and NHS consultant

#5 Post by Rockangel » Wed Aug 01, 2018 10:28 pm

Hi Sophie,

The short answer is no I didn't really get anywhere. The consultant didn't know anything about the condition and short of getting another letter from Care which said i should remain on Clexane till 6 weeks post partum they didn't do anything extra for me. I was also on Lenothroxine to bring my thyroid levels down but I don't have a thyroid condition so the consultant wanted me to stop taking them. I refused as I felt we had me stable so just reduced it to once every other day until birth. I also took calci chew twice a day but they have stopped that now post birth.

I am very happy to tell you that I gave birth to our beautiful baby daughter Eliza 9 days ago and she is perfect.

I stayed under consultant care for the whole pregnancy. Due to the Clexane I had to give birth in hospital and didn't have an option of a home birth or midwife led unit. I also wanted to have a water birth but the consultant has to sign that off and make a note in your blue book to say if they agree to it or not so the midwives know when you go in. You should do this towards the end of your pregnancy with your last consultant appointment. I didn't get any extra scans for any reason other than the normal ones for growth concerns (nothing to do with the C4M2) which were only precautionary and were all fine

Due to being on the Clexane you will also need to have an appointment with the anaesthetist who basically explains that you need to stop the Clexane immediately when you go into labour and you cannot have an Epidural within 12 hours of having the Clexane injection.
I had a long labour and had a epidural about 24 hours after my last injection which was bliss! I did lose a lot of blood which I'm not sure was due to the clexane or not but I'm well and the hospital dealt with everything amazingly.

So, my advice from my experience is although I felt that we were winging things as the Consultants didn't know what they were dealing with. I don't think there is anything more that you need to do anyway. Its just very unnerving that no one can tell you that. My pregnancy was uneventful and other than water retention, swelling and the usual pregnancy niggles things went ok and our baby daughter is beautiful.

I wish you all the best for your pregnancy. Please don't hesitate to ask any more questions if you have them and I'll do my best to tell you what I can.
Angie xx
Angie

ME 36, OH 42
May 16 - Ectopic Tube removed
Feb 16 - Ectopic Methotrexate
July 16 - 1st IVF Cycle 1 Embie 6 Frosties - BFP EDD 10/4/17 - mc 18/9/16 10w6d
Dec 16 & Mar 17 - Fronzen Transfer BFN
Oct 17 - BFP EDD 20/7/18

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