HELLP moms

drunkindonuts

Any moms out there with HELLP syndrome in a previous pregnancy who have had pregnancy complications again? Husband and I are thinking of TTC soon, but I'm pretty nervous about pregnancy after my previous pregnancy which consisted of strict bed rest at 30 weeks, an emergency c/s at 35 weeks and a 3 week long NICU stay. I've been trying to get into my OB to discuss everything, but they've rescheduled my appt twice now and my next appt isn't until mid January

sexyntexy

I had HELLP after delivery with my first child. I didn't have it at all with my second. I didn't have any complications during that pregnancy though just after delivery. GL!

drunkindonuts

Thank you!

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cmb2

I had my DD by e-c-section at the end of July at 36w due to HELLP which was found when I went in for a NST due to suspected IUGR - basically they said I was lucky I came in that day and it was caught or else the baby and I may not have made it to the next day - scary!

I'm currently 28w w/ #2.  When I talked to the drs about getting pregnant again they said the likelihood was "less" if it's with the same partner, and with closer pregnancies, but they really don't know what causes it so it's hard to give a specific percentage, or prevention plan or anything like that.

I asked for labs to be done before I got pregnant, when I was first pregnant, and at my glucose testing at 24w (since they were taking blood anyway).  All looks good so far, but of course I'm getting a little more worried as time goes on, and cautious.  I also got a BP cuff and take my BP every few days or if I'm feeling "off", so I can show the dr my numbers. Not 100% sure what the plan is for monitoring from here on out, but I plan on asking for labs to be done at my 29w appt next week, and prob at all my 2 week appointments (if not more frequently) since it is mostly a 3rd tri issue.

I will probably also start taking my BP regularly even if they don't ask me to, just because I feel like it happened so quickly to me last time, I want to notice any change as soon as possible.

I definitely read everything I could (which, unfortunately isn't much with HELLP) but nothing gave me 100% warm fuzzies about having a 2nd.  I think it depends on if you want to take that risk, how severe it was last time, and how comfortable you feel with your doctors and how they will monitor you and how comfortable you feel with being able to recognize any warning signs.

preeclampsia.org has forums, and they have a specific one for HELLP - that's where I probably found the most information, or most "community" of people with similar experiences, but again, it sucks that there isn't more out there on HELLP specifically.

Good Luck when you decide to TTC!  I'm mostly a lurker (on Aug12 too, since thats when I was due!), but since I don't find much information relating to HELLP, I wanted to provide you with another response.  Feel free to PM me if you want to discuss more - I will try to figure out how that works

drunkindonuts

cmb2 said:

I had my DD by e-c-section at the end of July at 36w due to HELLP which was found when I went in for a NST due to suspected IUGR - basically they said I was lucky I came in that day and it was caught or else the baby and I may not have made it to the next day - scary!

I'm currently 28w w/ #2.  When I talked to the drs about getting pregnant again they said the likelihood was "less" if it's with the same partner, and with closer pregnancies, but they really don't know what causes it so it's hard to give a specific percentage, or prevention plan or anything like that.

I asked for labs to be done before I got pregnant, when I was first pregnant, and at my glucose testing at 24w (since they were taking blood anyway).  All looks good so far, but of course I'm getting a little more worried as time goes on, and cautious.  I also got a BP cuff and take my BP every few days or if I'm feeling "off", so I can show the dr my numbers. Not 100% sure what the plan is for monitoring from here on out, but I plan on asking for labs to be done at my 29w appt next week, and prob at all my 2 week appointments (if not more frequently) since it is mostly a 3rd tri issue.

I will probably also start taking my BP regularly even if they don't ask me to, just because I feel like it happened so quickly to me last time, I want to notice any change as soon as possible.

I definitely read everything I could (which, unfortunately isn't much with HELLP) but nothing gave me 100% warm fuzzies about having a 2nd.  I think it depends on if you want to take that risk, how severe it was last time, and how comfortable you feel with your doctors and how they will monitor you and how comfortable you feel with being able to recognize any warning signs.

preeclampsia.org has forums, and they have a specific one for HELLP - that's where I probably found the most information, or most "community" of people with similar experiences, but again, it sucks that there isn't more out there on HELLP specifically.

Good Luck when you decide to TTC!  I'm mostly a lurker (on Aug12 too, since thats when I was due!), but since I don't find much information relating to HELLP, I wanted to provide you with another response.  Feel free to PM me if you want to discuss more - I will try to figure out how that works

Thanks for responding:) That is super scary! I'm an A12er too! I think I recognize seeing your name over there--I'm mostly a lurker too, but I've been posting more frequently.
I was delivered at 35 weeks by e c/s after insisting that I been seen. The weekend prior to the Monday I was delivered, I was having pretty severe abdominal/hepatic pain and the on-call physician told me to "lay down and take a tums and tylenol because it's probably indigestion". Well, I was already on bed rest so the laying down wasn't doing me any good. I called first thing Monday morning to insist on going in and was delivered as soon as my labs came back to dx HELLP.

My experience left me with doubts as far as quality of care. If I hadn't caught it and known something was wrong, who knows what the outcome may have been. I've considered changing obs, but my husband doesn't think that's a good idea.

I'll definitely check out the resources you've sent over, thanks again!! See you on A12!

SweetPeaKate

I delivered my son (pregnancy #1) at 30 weeks because of HELLP. Got pregnant when he was 15 months old and I am currently 37 weeks with #2. My BP has been creeping up ever so slowly, but still no concerns other than being watched for IUGR. I have a growth scan next week at 38 weeks. Basically, they can't tell you much and what they will tell you will most likely be so wishy washy that you will potentially leave just as confused.

I say (IMHO) that if you want to do it again, do it. They will watch you carefully and you will know what to push for and what to watch for. If ever I'm concerned, we do bloodwork and I usually end up feeling a little paranoid..but at least thankful that my fears/worries are put in place and not allowed to be pursued.

cmb2

SweetPeaKate said:

I delivered my son (pregnancy #1) at 30 weeks because of HELLP. Got pregnant when he was 15 months old and I am currently 37 weeks with #2. My BP has been creeping up ever so slowly, but still no concerns other than being watched for IUGR. I have a growth scan next week at 38 weeks. Basically, they can't tell you much and what they will tell you will most likely be so wishy washy that you will potentially leave just as confused.

I say (IMHO) that if you want to do it again, do it. They will watch you carefully and you will know what to push for and what to watch for. If ever I'm concerned, we do bloodwork and I usually end up feeling a little paranoid..but at least thankful that my fears/worries are put in place and not allowed to be pursued.

Totally agree with you. I also had the severe upper right quadrant (rib) pain for about 24 hours before I had gone in for my NST, but being a FTM, I really thought that it was just the baby in my ribs and I would have to deal with it for the rest of pregnancy.  The scary thing about HELLP is that so many of the symptoms present like regular pregnancy symptoms, and 9 times out of 10, the moms that are calling with the rib pain probably do just have indigestion, which is why the doctors say that (which doesn't make it right). And which is probably why so many of us that get it, get it severely, because we're not treated until the last minute when it's so bad that we have to insist on getting seen.  I post a "PSA" in my new BMB every couple of months about HELLP just to try to help anyone out if I can.  I never had the protein in my urine either, so they would have never caught it that way!

I do feel a little more paranoid this time around when I have any sort of rib pain, and I have started to monitor my bp more myself, especially being in the 3rd tri, but hoping for the best! Overly cautious to me is better than not recognizing the symptoms if it happens again. @SweetPeaKate - hope your last few weeks stay healthy

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mmsweeney1

Have any of you heard of Acute Fatty Liver of Pregnancy? From what I understand, it's similar to/ possibly related to HELLP. My AFLP probably showed up around 36 weeks and rapidly got worse back in July and lost my son. The doctors had no idea what was going on, and as a first timer I didn't either! Was in the ICU on dialysis for kidney failure and took a while for my liver and kidneys to stabilize. We saw many many doctors to try to see how often women deal with it a second time around (no definite answers of course because the doctors have never even seen a case of it before). Since we tested negative for a genetic link, it seems the recurrence rate is very low. Even though I'm only 7 weeks along and this is a 3rd trimester problem, I feel like I am already waiting for things to go wrong. It can be so scary to be pregnant after complications! Like many of you said, at least this time we know what to look for and have new MFM doctors. Wishing you all the best!

toohappy11

Does anyone have updates? We just found out we are expecting after Hellps with our first and I would love any information!

toohappy11

Does anyone have updates? We just found out we are expecting after Hellps with our first and I would love any information!

SweetPeaKate

@toohappy11

My growth scan at 38 weeks came back with baby measuring in the 7th percentile…down from the 9th 3 weeks prior. We delivered a handsome, perfectly healthy, petite (5 lbs. 3 oz) baby boy via c-section. I had absolutely NO issues during pregnancy, delivery, or post partum. Not sure what did it other than a whole lot of prayer. It is totally possible. 

My advice (FWIW):

*First of all congratulations!! People may overwhelm you with questions & concerns. Don't let them stress you out.

*Stay calm and positive. I heard so many different possibilities and outcomes throughout my pregnancy and it turns out NONE of them were right.

*Push for tests that you want done. I requested labs done a couple extra times as well as pushed for the extra ultrasounds I needed. It never hurts to speak your mind.

*Be realistic about how you are feeling. You will experience every emotion…not just because you are pregnant, but because you have a history. There will be MANY times you think things may be starting because of how you are feeling. There's a fine line between being honest and letting your mind run wild with possibilities.

*Enjoy your pregnancy as much as you possibly can. Knowing that it can end early--but also that even though a NICU stay is not ideal, you've been through it once and you can get through it again.

Best of luck!

cmb2

I'll be 32w this week and no issues yet.  I will be requesting labs be done at my next few 2 week appts as well as each 1w appt after that, since I know how quickly this can happen.  I'm also just more aware of possible symptoms, and have been taking my bp every other day, watching for swelling, being hyper aware of any rib pain...while at the same time trying to relax and enjoy it like everything @sweetpeakate said!

Still not out of the woods yet, but hoping that with the labs as well as my personal monitoring, anything that comes up will be catched with plenty of time to have a healthy baby and healthy mom. 

Good luck to you!

AggieBeth06

Thanks for sharing, and I like the original question.

I had HELLP with DS. I believe my symptoms really started around 30 weeks, but we delivered at 34 via c/s under g/a.

At the time, I weighed much more than I do now. My goal was to lose all my excess weight before TTC, and I got close before rebounded during stress last year. I'm about 40 lbs overweight now, which is better than the ~140 I was last time at conception.

It's still very early for me, but this is our treatment plan:
- As soon as I got the (SURPRISE!!!) BFP, and shortly after freaking out, I made an urgent appointment with my OB
- She started me on baby aspirin and is having me come in at about 8 weeks for an u/s and check up
- She is having me take my BP 2x a day and record it on an app in my phone so we can watch the trend. If it goes up, I will be put on BP meds. So far, I'm low-normal... Although I don't expect to see a bump in that until 2nd tri
- My OB says that there is not a cause for alarm, but we will monitor my condition very closely and may come in the office more frequently, just depending
- Because of my severity of the syndrome with DS, I have about a 30% chance of getting it again... But that's a 70% chance I won't.
- She has advised to eliminate as much stress as possible and to be prepare just in case we need to go on bed rest in a few months

At this point, I'm still dumbfounded and scared, but am doing what she asked me to do.

Also, I'm not sure if you have talked with your doctor about doing blood work to investigate for autoimmune disorders? I found out after having DS that I have Hashimoto's thyroiditis, which could be why I had HELLP. Knowing about these underlying conditions can help doctors to manage your care and hopefully delay or prevent it from recurring.

I do find it frustrating that not much is really known about HELLP, so I find myself praying a lot about it. I feel like at this point, there are certain things I can control (eating, exercise, prenatal care) and certain things that I can't. Why berate myself over the things that I can't control.

Good luck ladies!