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Lost my baby girl and had three miscarriages

(16 Posts)
Sophfr17 Fri 17-Apr-20 10:55:23

Hi everyone,
I am French, I am 38, and I live in London.
A year ago my partner and I decided to have a baby. It worked the first time, we were so happy! At 14 weeks, we found out that our baby girl suffered from multiple growth abnormalities, and that she would die quickly and in pain after being born. We took the hard decision to stop the pregnancy.
I got pregnant again 3 months later, but had a spontaneous miscarriage at 6 weeks.
I got pregnant again the month after, but at 8 weeks, we found out the embryo had stopped growing at 6 weeks. Because the evacuation would take over a month to happen considering my hormone levels, I had a surgey to remove it.
The following 2 months were an epic battle with the NHS to get some analyses done. NO. As a researcher, I knew what had to be done. Therefore, I took a Eurostar to Paris and had a full blood test done (all kinds of antibodies, thyroid profiles, listeria...). Results came back positive for a few markers, which were worrying (i have been treated for hypothyroidy for the past 15 years). After hard work to get some doctors reading the results, I was told to try to get pregnant again, because "results are not too bad, it should be fine".
I got pregnant again, and I lost it at 6 weeks. I evacuated everything so no need for procedure. At least.
When i got pregnant for the 4th time, i begged GP to give me a form for a thyroid profile, which was done 4 days before the miscarriage. Results came back wrong again. Asked to investigate more, because T3 levels are missing. NO.
I emailed numerous specialists who "took care" (...) of my in the last 12 months. I received no reply. The worst thing is I know that 99% of the analyses that must be done require only blood tests.
What the hell is happening?
We are alone, in this country that is not ours. Is this the reason why they dont take care of me? I am starting to wonder....
I should be resting, crying, and taking care of myself. But instead, my body and my head are full of rage, which i feel is even worse.
Thanks for taking the time to read me, and take good care of yourselves.
Sophie.

OP’s posts: |
peperethecat Fri 17-Apr-20 22:11:26

Hi Sophie.

I'm sorry for your losses. I have had three losses in the last year and I have just found out I am pregnant again but my HCG is far too low and I am worried it may be ectopic. I am not expecting a good outcome anyway.

I actually live in France so I'm like the opposite of you. I do think the French healthcare system takes better care of women's health and it is easier to get the blood tests and things you need. I think anyone would have the same issues trying to get help on the NHS, I doubt it's because you're French.

It's a horrible situation to be in.

Sophfr17 Sat 18-Apr-20 13:10:48

Hi,
Thanks for sharing. I am very sorry to read what happened, and what may be happening to you. How are you feeling today? How far are you in your pregnancy? Is your HCG level that low?
It is definitely easier in France, first because each woman has her own gynecologist. Second, because you can call her/him whenever you need. And third, because the system is more operational and more advanced in all kinds of areas, including the management of miscarriage and baby loss.
If I had been in France, some genetic investigations would have been done on my first baby, which was not the case at UCLH, and I would have already had all kinds of blood tests and treatments (progesterone, baby aspirin, low dose of cortisone).
I sincerely hope everything will be fine for you. You can always call the emergency (Port Royal Maternity if you are in Paris). If you state your history and that your HCG level is going down (you can add that you are in pain), I know they will ask you to come and you will have a scan. Unless your pregnancy it too early (< 6.5 weeks).
When i had my miscarriage last weekend, I called them (even though i live in London / the Dr on the phone did not know that) because i needed a professional opinion: she said "considering your history, come asap, you will have a scan".
Take good care of you.
Sophie.

OP’s posts: |
peperethecat Sat 18-Apr-20 20:13:12

Based on my ovulation date I should be 5+5 by now. My HCG is rising but it is very low. (383 on Thursday and 600 today.) I'm glad that it is so easy to get blood tests done in France. I'm going to get another one done on Monday and then email my gyneco again. As soon as my HCG is high enough to see something on an ultrasound I want her to scan me and check where it is.

Thanks for letting me know about Port Royal. I'm in 78 so staying local for the moment but I could go to Paris if I feel it isn't working out here.

Sophfr17 Sun 19-Apr-20 11:15:03

Hi,
It is quite difficult to interpret your hcg level at this stage. It should be between 300 and 2000 at 5w+5, depending on women. However, this level has almost doubled in two days. So i guess you will know more at your next blood test. How are you feeling today? If you still have pregnancy symptoms and no cramps i would say, stay cool, although i know it is absolutely impossible.
Hope you will update us.
Sophie

OP’s posts: |
peperethecat Sun 19-Apr-20 11:19:23

I have no symptoms at all other than some very very mild cramping, but that has been the same in all my pregnancies so far. In my last pregnancy my HCG was around 30000 at this point (but I still ended up miscarrying). There is nothing I can do but wait for the result of my next beta and then email my doctor again.

But it's the low and slow rising HCG plus the fact that I bled so heavily last week which makes me think it may be ectopic. Hopefully I will get some answers this week.

How are you doing today? What is your next move?

Sophfr17 Sun 19-Apr-20 11:36:10

I totally understand your feeling. I would be and have been exactly like you. I think tracking hcg level is good, but it also makes us super worried...
In my 4 pregnancies in never had symptoms either. Only slight breast pain but that was it. I actually started getting nausea at 13w during my 1st pregnancy ^^
Ectopic pregnancy, although i never had one, would bring you heavy pain from the side you ovulated, and shoulder pain (this is what they told my at A&E last weekend).
I really hope you will have a scan i a few days. You will be 6w, so even though the embryo is too small to be seen, they can determine the location of the sac.
Life is shit.
I am fine, thanks. I have a video consult next week with a Dr from the Repro Medicine Unit at UCLH. I hope he will understand that there is a serious problem with my thyroid and that there is no time to wast anymore. But GP only evaluates TSH and free t4 levels (freaking protocol), which is not enough, need the T3 too. Anyway, considering my age, i will beg him to do all blood analyses at the same time, otherwise it will delay everything.
But I have a plan B in Paris, a Dr who is willing to do ALL examas on both of us during a 2-day period. If uk doctors keep playing with my health, I will have no choice but going elsewhere. I will be very disappointed by this country if I have to do that.
So my next move will depend entirely on that doctors' empathy...

OP’s posts: |
peperethecat Sun 19-Apr-20 15:20:37

Do you know which are the best doctors in Paris for investigating recurrent miscarriage or for IVF? I think my gyneco is OK but I'm wondering whether it's time to get a second opinion.

If you think you have a thyroid problem then you definitely need that checked out. If it's the reason for your losses it should be such an easy thing to fix.

Sophfr17 Mon 20-Apr-20 08:41:19

Hi,
How are you today?
Yes I know some good specialists. What is your gynecologist waiting for? Has she requested a blood test, which would include the following:
-thyroid profile (with antibodies)
-anti-mitochondrial, nuclear, phospholipids, cardiolipid, erythrocyte
-listeria serology
-hysteroscopy (never had one though...)
These are easy and quick tests to do.
Sophie

OP’s posts: |
peperethecat Mon 20-Apr-20 11:16:10

I think I have done all these tests but I think I want a second opinion with a different doctor.

My gyneco is talking about doing IVF later in the year but I just learned that preimplantation genetic screening is illegal in France and I am worried that IVF will be no more likely to succeed than our natural attempts if they are not allowed to make sure that the embryo they are transferring is chromosomally normal.

I am astonished. What a stupid rule, clearly made by mostly middle aged male "bons pères de famille) with three children and no concept of how infertility and miscarriage destroys people's lives.

Sophfr17 Mon 20-Apr-20 13:32:12

Hey,
I though that FIV-DPI (^diagnostic pre-implantatoire^) was done in a few institutes in France.... but I could be wrong. Have you had some carytotype done on both of you?
So what you mean is that all your results came back ok, and that they found no scientific cause for all your losses? Have you received any treatment?
I feel like we are both stuck. However, there are lots of units in Paris Hospitals that you can contact, such as Necker and Béclère. I would suggest to contact them and make some appointments asap. If you get answers in the mean time by another doctor, or if your current pregnancy is going well, it will be easier to cancel these appointments. I am going to do the same.
How are you today? Have you had a blood test?

OP’s posts: |
peperethecat Mon 20-Apr-20 13:38:46

I think maybe it is legal for people who have specific genetic problems they need to screen for, but as far as I can make out you can't just do it to make sure your embryos have the right number of chromosomes. I don't have any particular genetic markers, I think my eggs are just prematurely aged and a large number of them are abnormal. We both had caryotyping done and it came back normal.

I had my third beta today and it has gone down from 600 to 380 (so it's back down to the same level it was on Thursday). I'll get a few more betas done to make sure it keeps going down and doesn't go up again, but assuming it keeps going down I think I'm just going to file this one under "weirdest miscarriage ever". So that's four confirmed now, in less than a year. sad

I don't want to burn any bridges with my gyneco because most of the time I think she is OK, and she's supposed to be the best person locally for miscarriages. If I don't stay with her then I will have to find a gyneco in Paris and then go into Paris for all my appointments, which could get complicated if (hopefully when) I have a successful pregnancy and need regular appointments. But I think I am going to contact a few doctors in Paris and try and find someone really good who can examine my case from the beginning and see if there is anything we haven't tried yet which might be relevant. If they don't find anything or recommend anything different to what my gyneco is doing, I guess I can stay with her and she doesn't have to know I saw someone else, right? What do you think?

user1471523870 Mon 20-Apr-20 13:59:38

I am very sorry for your loss and what you have been through. I am not a doctor and can't give you any medical advice, but I can bring my own experience.
I am too originally from abroad, but have been living here for many many years and I got to understand the system.
Unfortunately I had several miscarriages (5+), underwent IVF multiple times and had a huge variety of test done. After about 10 years I now have a baby boy, but I don't even know where to start telling my story.

Something that has worked well for me:
- after the first miscarriage I learned I can go straight to my local EPU, which does not require any GP referral (this might be only applicable to mine or to my case as I had multiple miscarriages, but they have always been so helpful)
- after the first miscarriage the EPU consultant referred me to a recurrent miscarriages clinic. We had a number of test and chromosome investigations done, to understand if the problem was genetic.
- I always prefer to manage the miscarriages naturally, however on the third one I asked to have it managed surgically so that they could analyze the embryo. My first miscarriage was a blighted ovum, which is a chromosomal issue. I turned out also my 3rd was a chromosomal issue (different one).
- All the above led us to chose a technique called PGS for our IVF. We asked for the embryios's DNA to be analyzed prior to transfer, as we then knew that for some unknown reason we were producing non-healthy embryios

To be honest, I quickly understood GPs are a bit out of their depths when it comes to fertility. Also, there is what is called a 'postcode lottery' when it comes to public funding for IVF.

I had many failures on IVF, we spent a fortune on private consultants, procedures and more IVF add-ons. But we have been successful eventually.

CottonSock Mon 20-Apr-20 14:03:25

It's awful. I lost 4 pregnancies, but do have 2 children now. I was tested by gp and treated by early pregnancy unit. I was given aspirin and progesterone then cleaxane injections.. however the latter was because they misdiagnosed me with a clotting disorder due to lab error!

Sophfr17 Mon 20-Apr-20 14:36:44

@peperethecat
I am so sorry that this miscarriage is indeed happening... at your stage, everything should happen naturally, hopefully. If you trust your gyneco, you should stay with her. I suppose you have called her and told her what you are going through? You could maybe suggest that she gets in touch with a colleague for a second opinion? You are lucky that she has performed all these tests already. There are lots of very good IVF specialists in Paris. I am sure you can suggest a few to her.

@user1471523870
Thank you very much for sharing your experience. You have been through a lot too. The EPU and the FMU (Fetal Medicine Unit) of UCLH have seen me in the last 10 months so many times I could not count. Even the receptionist always welcomes me with a "Hi Sophie"! However no doctor from the EPU or the FMU offered me any tests. Ever. And no genetic investigation was done on our first baby. I don't know how you managed to get these done, including caryotypes, because, despite my pain and cry for help, none ever offered me any kind of investigation. They completely ignore me. And yes, GP are useless, at least the ones from my practice...

@Cottonsock
You message gives some hope to all of us smile you also have been lucky to be treated like a human being, and to have been offered some test and treatments. I don't know what is wrong with me.
Let's stay positive... i have a phone call with a Dr on thursday, finally. I hope he will offer us some solutions.

Take care.

OP’s posts: |
peperethecat Wed 22-Apr-20 09:35:00

@Sophfr17 I'm not sure, sometimes I trust her, sometimes I don't. Do you know of any doctors in Paris who are very good at treating patients with recurrent miscarriage? Everything seems to be either suivi de grossesse or PMA, I try to search for miscarriage specialists and I can't find anything. It feels like it's the kind of infertility that no one wants to specialise in because it's too depressing.

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