I have some questions...need some advice

CRUN2012

Okay- to make a long story short I just got AF #2 after my d&c in. Nov due to residual placenta. My dr asked that we wait 3 cycles before ttc again. Now that ttc is on my mind again I have some questions.
According to my drs, what happened during my last pregnancy was a complete fluke. No reason for them to think it wouldever happen again (of course it COULD but they are confident it won't). With that said I feel confident too, but I'm obviously terrified that it will. I keep thinking 'well of course they won't think it will happen again..until it does' and I clearly don't want something to happen before they investigate what else could be wrong. So-for those of you that found out about any conditions or health/medical concerns due to your loss-how did the drs determine this? I'm basically wondering if I should push for more tests or if I should trust my drs? Any sort of guidance would be greatly appreciated!
Also-just a short background...my baby's heart stopped at 26 weeks due to suspected cord accident (kinked) and the pathologist concluded he had down syndrome. This was never confirmed thru any formal tests. All of my bloodwork right after delivery came back normal.
Thanks!

jess123456

Hugs to you. I know this feeling all too well. We lost our daughter to a trisomy that according to the amnio results was a fluke and not something that we passed down via translocation. We wanted more answers so we saught the help of a geneticist who gave us full karotyping tests and discussed our history with us. A karotyping is essentially a blood test that is conducted to analyze your chromosomes. It will determine if you have translocations etc. It was very easy and took about a month or so to get the results.

While we cannot do anything to bring our sweet girl back, it was important for us to do this testing as we looked to move forward in trying again. The truth is that regardless of the testing results I am still scared out of my mind but the tests did give us some peace of mind. I am sure others can speak to other testings that they had done. Thinking of you.

jess123456

I should also add that the whole idea of something "rare" and "small chance of happening again" verbiage is really hard to hear once you have been through the worst. I constantly hear this from my doctor and I feel like we just don't fit into that category anymore which is a total normal feeling to have. Perhaps it might help you to get a second opinion just for peace of mind even if no further tests are offered. My therapist actually recommended this to me because I couldn't get the idea out of my head that my doctor possibly could be wrong.

Noethola

***Siggy warning***

Our daughter's heart stopped beating and it was marked as a possible cord accident, no autopsy was done nor did they really know if it was the cord. However, my dr ran a full blood panel afterward. The tests came back that I have a clotting disorder. Usually, the clotting disorder only manifest itself in the mother or before 12 weeks. Its rare that it would affect a later pregnancy (though it still could have given me clots). 

It really depends on how much you trust your drs. My dr was really proactive about exhausting tests, just in case. I was thankful for that and took his lead on the testing. 

It is very hard not to be terrified that it will happen again. 

bunnybun4

our daughter's condition (hydrocephalous) was also labeled as "fluke" and we were given a 1% chance of it happening to us again.  I still have visions of going to another anatomy scan and them saying, "oops...we were wrong!  it is happening again."  I am sure it is a normal fear for loss moms.

I am undergoing repeat loss testing now with an RE because I have since had 2 more early losses...like other people mentioned they are running our karyotypes and also found out I have a mild clotting disorder as well as trouble absorbing folic acid.  while they still claim her condition is fluke I feel better knowing that I am doing everything I can do to stop it from happening again.

sorry you are struggling with this.

ThereBeDragons

***siggy warning & current pregnancy mentioned***

Following my loss last year, my OB had no answers ("these things sometimes happen") and my RE couldn't figure out what had happened based on the hospital reports (not his speciality). No additional testing was done prior to my current pregnancy.

It wasn't until I was just over 16 weeks that I had my (first visit with her) OB mention incompetent cervix and recommend me to a MFM to be evaluated for a cerclage.

My MFM, however, spent over an hour going over all the details of the days leading up to the loss and the loss itself. It was hard to relive, but at the end of it he felt very confident in making a diagnosis of PTL with a possible side of incompetent cervix. We didn't get that diagnosis until more than a year after our loss and only once my following pregnancy advanced enough to send me to a high risk doc.

Thing is- there weren't any tests they could have run. The only thing that could (and perhaps should) have been done differently would have been an earlier evaluation by an MFM- which would have allowed my preventative cerclage to be placed much earlier and probably with a much higher measurement (I had already funneled to a critical measurement by the time I was evaluated). Which might have helped keep me off bed rest and lowered my risk for delivering early (as of right now my docs think it'll be a miracle if I make it to 36 weeks).

So my recommendation would be to request a consult with a high risk OB to look over your case and give you his professional evaluation of your risks and what could be done to prevent a recurrence. OBs are awesome but they generally deal with low risk patients and refer complicated cases to MFMs. So when its time to determine the best course of action following a complicated loss- it makes sense to get the case looked at by a doctor experienced with complicated cases and find out his recommendations for preventing another.

Just my two cents.

kz's_girlygirl

I don't really have any advice, but wanted to let you know I am thinking of you, and can completely understand how you are feeling. 

When my water broke, I was already dilated to almost 2cm, and the fluid showed an infection.  There's no way to know whether I was dilated already, and that is what allowed the infection to occur and my water to break, or if infection set in and caused my water to break, leading to dilation.

I am terrified of it happening again.  My RE says it sounds like IC to him, and recommends a preventative cerclage as well as more frequent swabs for infection, but my OB says there's no way to know if it was IC, and doesn't perform preventative cerclages.  My MFM said they would just recommend monitoring my cervix starting at 16wks via external ultrasound and avoid any internal exams, including swabs.  It's an awful catch-22 and I don't know who to trust!

I would probably exhaust as many testing options as you can though.  I've had karyotyping and immune testing since working with my RE, so long before Jesse died, and I am really grateful that we have that information.  But, as with so many things on this journey, be prepared for no answers. 

GL with whatever you choose, and know that you are not alone! 

VyD81

Hugs. I understand all of your concerns. I had an amniocentesis done at 20 weeks when the ultra sound shown him smaller than gestation age. Everything came back fine and he continued to be under developed and I had multiple ultra sound tests that measure his heart, the fluid, the Doppler to test the fluid from the placenta. Unfortunately, after all the tests and the lab work on the placenta, all the doctors can tell me is that the placenta was small and didn't send enough nutrients to my boy. 

I don't know if additional tests will give you the answer you're seeking. In my case, the test results, although no answer, do ease my mind a bit as they do support that this is a very rare incident and probably won't happen again. 

I hope that any additional tests will help ease your mind with TTC again. 

CRUN2012

Thanks everyone! I've discussed with my drs about what will happen when I do become pregnant again and we have developed a plan of testing that will hopefully give me piece of mind...of course I'm sure I will never truly feel safe..but it should help at least.
I definitely appreciate you sharing your stories with me and offering your guidance.