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Miscarriage/pregnancy loss

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*Trigger warning - post D&C testing of embryo* - 12 months and no results

3 replies

jacquesjacques · 04/11/2019 06:34

Last summer, I had two chemical pregnancies in a row (4w and 5.5w), followed by a MMC diagnosed in November (11+6, baby only made it to 6+3).

My MMC was dealt with surgically and I signed consent forms agreeing to the testing of the embryo and detailing my wishes for how they handled the remains post-testing. I wasn't told how long this would take, only that it would be sent to another county for the process and that there was a waiting list. In my distraught state, and my desperation for an answer as to why I was miscarrying so frequently, I didn't ask any questions and just blindly signed the forms.

A month later, once I had recovered from the surgery and felt a little emotionally stronger, I went to see my GP to ask about a referral to the recurrent miscarriage clinic, which he agreed to. While I was there, I asked about the testing of the tissues, and was told it would take 'months' due to the waiting list. As it had only been 4 weeks or so at this point, I stupidly didn't ask him to elaborate or give me an idea as to how many months.

Very shortly after, I fell pregnant again and discovered that I was 6 weeks along at the time my first recurrent miscarriage clinic appointment came around. I still went to the appointment on the advice of the EPU, and the consultant there was appalled to hear that I'd had no test results 3-4 months after the surgery. He promised to speak to the admin staff at the EPU and get them to call me.

I heard nothing back but was so focused on coping with my current pregnancy, which was emotionally gruelling in its early stages for obvious reasons, and has brought its fair share of physical hiccups along the way.

At my 20 week midwife appointment, I mentioned in passing that I still hadn't had any results from the tests on the embryo, and indeed didn't even know where it was, and she promptly called a 'bereavement midwife' to enquire; but said midwife was on holiday until the next month so a message was left there and then with my name and number and a request to call me back with any information.

That was 3 months ago and I'm now 39w. It's been almost 11 months since my MMC. I know that I'm lucky to have come this far, and that there's a good possibility that they wouldn't have been able to diagnose a reason for the miscarriages. The embryo was so tiny that there was also a chance that testing may not have been possible when it came to it.

However, I can't help but feel that I should have been more informed than I have, due to both the sensitivity of the situation and the fact that it's basically a part of my body that has been taken away and dealt with.

I know that at various points I should have asked for more clarification on dates and timelines, but I've never felt 100% certain that I was asking the right people and nobody has seemed to know who the best person to ask is. I've also found it really hard to bring it all up during this pregnancy, for obvious reasons. However, the closer I get to my due date, the more vehemently I feel I need to know what happened to that embryo.

Where should I go next? Who would you ask? Is it something PALS could sort? Is there a specific place that all of these tests are carried out that I could contact?

Sorry for the waffle and well done if you're still reading - I didn't want to drip feed!

OP posts:
Yurtle · 04/11/2019 06:54

I’m sorry for your losses and congratulations on this pregnancy. When I had my last mc there were two different types of testing. One seemed to be standard from the wording was included in the consent form, which sounds like what you signed. It was a test to make sure that it wasn’t something like a molar pregnancy. I never heard back about the results of that test. The second lot of testing was a microarray to look at the genetics. I had to push quite hard to get this test done, it’s not standard unless there have been several losses. These results I did get back.

When you gave consent for testing, do you know if they were planning to test the genetics or could the tests just have been to rule out molar pregnancy? In which case they don’t seem to let you know the results unless there’s a problem.

jacquesjacques · 04/11/2019 06:59

Hi @Yurtle - thanks so much for replying! It was testing for chromosomal abnormalities as far as I understood. We'd already had an early scan and seen a heartbeat, so we knew that it wasn't a molar pregnancy. That's why I'm so surprised that I've never had any results back - it feels a bit like they've lost it/disposed of the tissue accidentally before testing and haven't told me or something!

OP posts:
Yurtle · 04/11/2019 07:19

It must be very frustrating not knowing the results. It took over a month for the genetics to come back iirc, but a year is awful. I wonder then like you, if they just didn’t do the tests for some reason. I agree that PALS (are they still called that?) should be able to help with this. They helped me when the hospital lost all my records and didn’t seem to give a crap about it.

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