Chances of this happening again?

Krizzista · June 2019

My baby was due Dec 29, but found out this week his heart had stopped, likely due to severe Down syndrome. Dr told me he had multiple deformities. She told me the chances of this happening again are slim, but Google hasn’t eased my concerns at all. Not trying again immediately, but just wondering if there is anyone here who has had Down syndrome pg loss and gone on to have a healthy pregnancy. I’m 32 I have 2 kids already. Had no indication anything was wrong this time, so I was completely blindsided.

dpchickens · June 2019

Krizzista Since you already have had two healthy pregnancies, chances are that this was a chromosomal fluke (Downs is a Trisomy issue) and you fall into the 1 in 4 (give or take) pregnancies that end in MC statistic. I'm sorry that you're finding out so late, it must be exceedingly difficult. If you are concerned about carrying the markers for some major chromosomal abnormalities, you can do karotyping and the like. I know I also did the Counsyl test to screen for genetic issues as well. With only one loss and 2 healthy kids, you'd probably have to pay out of pocket for all of this though. Try not to get too hyped up by Doctor Google... with just the basic stats you gave, chances are this was a fluke and not the norm for you and your MC rate is probably very low.

As for success stories... it's not me... I'd literally give my left arm to discover the cause of my losses...

Krizzista · June 2019

Thank you so much, that helps a lot. I didn’t talk with my dr at length about it yet, will do so at my follow up in a few weeks. I know better than to google such things, but I did it anyway. I’m so very sorry you have no answers for your losses. That is so hard, hugs to you.

dpchickens · June 2019

Yeah, Google can be your worst enemy at a time like this! It's also terrifying because it's an awful thing that you become so afraid will happen again and again. But honestly, all you can do is tests when they tell you to, be as healthy as you can be, and recognize that when you're PG, you're PG at that moment and appreciate it for as long as you are regardless of the outcome... good luck to you.

ruby0902 · June 2019

@dpchickens - I am thankful for your perspective and support on these board topics. I just had my 2nd pregnancy and 2nd missed miscarriage with no living children. All the standard pg testing had come back normal, so now I'm starting to look into some of the more advanced testing. It'll be at least 3 months until we start trying again, so we can complete the testing to see if anything comes back, and I know it's going to be such a scary time going into the next pregnancy, whenever that is, that I won't want to connect, etc. I'm thinking of going to some counseling to help with the emotional aftermath, and am trying to find where to start.

I found out about the 2nd mmc at my 12wk scan and had the d&c last week. It's just devastating to go through this, especially more than once. I feel kind of lost right now. I know this is a rant - thanks for reading and I'm really thankful to have this board.

dpchickens · June 2019

@ruby0902 Sorry for your losses. It is devastating to become part of the Recurrent Pregnancy Loss club, and such a hard road to go down. I appreciated all the testing I got done, even if I ended up 'unexplained.' At least I knew I wasn't just losing babies when something could've been done about it. However, each test that came back 'normal/fine' was both a relief that things were ok, and yet a double-edged sword of "So, what IS the issue then?"

Did you have the fetal tissue tested from your second loss?

Also, I know it's hard to do... but for future pregnancies, remember that you ARE PG at that moment... and nothing you do is going to change the outcome, and you don't want to regret any time you had with/thinking of THAT baby. So just appreciate every day that you ARE PG and think to yourself that you are thankful that you are PG THAT day, regardless of whether you get to connect for 2 days, 6 weeks, or an entire PG until a healthy child is in your arms.

Hoping you have a much better outcome than I did!

ruby0902 · June 2019

@dpchickens - thank you so much for the response ♡ connecting with others during this time has been one of the most comforting things during a very, very sad experience.

I did request to get the fetal tissue tested this time, but have not seen any results yet. My first mmc I tried to pass naturally but then ended up needing a D&C two months later to remove retained tissue, so there wasn't anything left to really test for on that one.

I have a follow-up appt. with my OB on July 3 to talk about the additional testing and have been trying to do as much research as possible so I know what tests to ask about - were there any tests you found particularly helpful or a total waste of time? I'm tempted to just get the full panel and get everything out of the way vs. trying to do anything piece wise. I was also looking into the "general management" options such as taking baby aspirin next time but I feel like I need to do more research on that.

It's scary not to know whether next time will work, but you are completely right in living in the moment. Many of my friends who have never known and hopefully never will know the pain and sadness of mc complain about how annoying or uncomfortable their pregnancies are, but I will surely be thankful for every moment of mine!!

In the meantime, I'm trying to make a summer "bucket list" of things I wouldn't have done if I were pregnant and hope that will help to pass the time healthily and constructively. Also hoping to focus on strengthening my marriage so we can face whatever is coming our way in the future. Best of luck to you as well and happy to be able to connect - makes me feel less alone

rklinge0 · June 2019

I am a minority here, was here several years ago.
Tw: my 1st pregnancy I had a living child who has t21, was 28 at the time. end tw
I got pregnant 18 months later and had a 1st trimester miscarriage. Then had a neurotypical baby last year.
The chances of your next baby having any chromosomal anomalies is 1%, until 40 and then it goes up. And yes there are a few local moms who have 2 kids, so it does happen. Also, translocation is rare ( 3% but only half are inherited) so if you are worried, you can get tested.

holly321 · July 2019

I know this is older, but thought I would still respond, Tw for Lc and pregnancy mentioned.

My first pregnancy resulted in my dd. Then I had an early second trimester loss that was most likely due to Down syndrome. I also had 2 possible CP that we couldn’t be sure of. Then I had my DS. We started trying again a few years later, I had a molar pregnancy followed by 2 CP’s. I am now 15 weeks pregnant with a healthy boy. While I have successfully gotten pregnant with a healthy child, it hasn’t been an easy road, but there is hope. Best of luck to you.

fishee333 · July 2019

TW for lc.
I'm sorry what you're going through. I'm responding to both empathize and give you hope. I have a healthy 3 year old daughter, and when she was 1.5 I got pregnant and had a miscarriage at 16 weeks due to Down Syndrome. I was really scared about the same thing happening again, but we decided to try again anyway. 3 months later, I got pregnant again and had my healthy baby boy last August. It was a very tough pregnancy mentally for me, because I was constantly worried about his health. And a big part of me is scared to try again in fear we will have another miscarriage if we try again. Oh and I am 34.

Krizzista · July 2019

Thank you for your response. I’m a worrier by nature (and I wasn’t worried at all about my pregnancy, go figure!) so I know that I’ll be a train wreck when we try again. Hearing positive outcomes certainly helps!

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