HELLP syndrome - second pregnancy?

[Waffles]

Hi! I hope you don't mind me posting here - I had never noticed this board until today! I was actually wondering where to go after GP and mostly went back to ML etc. :-)

BabyWaffles is now almost 8 months and we're starting to discuss TTC#2. I know it's quick but I'm 41 in September and she didn't get there very easily, so...

This might end up more a brain dump than anything but I'm sort of at a loss of going ahead with TTC or being one and done, despite that never being the picture we had of our family. I would appreciate any thoughts/insights or advice.

Long story short, I had no issues getting pregnant but ended up with a MMC at 8 weeks followed by D&C, then a MC at 7 weeks, and another MMC at 9 weeks for which I had to take double doses of cytotec. By the time I got pregnant for the 4th time I was on baby aspirin, lovenox (inconclusive clotting panel), l thyroxine and high blood pressure meds (chronic). The pregnancy went fantastically well except I developed gestational diabetes at the end of it.

Now for the dramatics: despite my blood pressure being under control and close monitoring, I developed severe (class 1) but almost asymptomatic HELLP syndrome at 35 weeks (no swelling, no raised BP, just a weird pain under my ribs which I attributed to the baby). I popped into hospital to check the reading on my protein test (one cross), they decided to keep me in for monitoring, found my BP slightly high, admitted me for the night to do blood work and 24 hour urine collection and a hour later I was told I had severe HELLP and would be delivering via emergency c section after receiving transfusions and anti seizure meds.

It all really happened in a blur and I didn't understand the gravity of it all until some time later but baby was fine (spent 12 days in NICU for feeding) and after 2 days in ICU, so was I.

Does anyone have experience with HELLP syndrome and following with another pregnancy?

One of the issues I have specifically is that I was very closely monitored already, and on all the drugs they would give you if you were diagnosed with pre eclampsia, so I don't really see what else could be done to prevent it from happening again?

Obviously it's all up in the air as I have no idea how quickly I could get/stay pregnant, and that is a factor already, but I now realise how close I was to not making it and that scares the shit out of me.

Sorry this was long, thanks for reading.

[shauni27]

I have no advice or experience, but I did not want to read without commenting. Have you asked your OBGYN about this?

[Waffles]

Thank you shauni27. I have sent her a message about precautions etc and she just said recurrence is definitely a risk and we would double the aspirin dose at some point in pregnancy. I guess the main thing would be to monitor me even more and be very aware of symptoms.

To be honest it doesn't really reassure me.

[shauni27]

Waffles, I'm sorry :/ That is frustrating. Do you feel like if you could magically know that you would for sure develop HELLP or Pre-E again you would definitely not get pregnant? Or do you feel like you are ok with the risks if you knew your medical team would take very serious steps to make sure to monitor you to the max?

[Waffles]

shauni27, that's the issue: I don't think I would. As good as I felt physically through pregnancy, it was stressful given my prior losses. I only sort of relaxed in the third trimester. To add this stress to it seems overwhelming.

Also, at the risk of sounding dramatic, they told me I had maximum 48 hours to live when they diagnosed me. I was incredibly lucky but I am hesitant to take another chance.

[shauni27]

Waffles, with that information, and knowing how overwhelmingly stressed I was during pregnancy due to my previous loss, I PERSONALLY would not likely get pregnant again. I have firmly always been in the OAD camp, but I think if I was not sure and then had that traumatic experience and there was a decent risk for it to happen again, I would not be willing to put my body through that. Do you feel like your family is complete or are you open to other avenues of making it so? Fostering, for example? Surrogacy (which I know is crazy $$$ and brings a whole host of other potential problems, just curious)?

[Waffles]

shauni27, I always imagined having two kids but of course I didn't think it would take me 3 years to have the first so I can relativise in a sense. You can't always get what you want, right?

I personally wouldn't be open to fostering or surrogacy and adoption here is both very expensive and a lengthy process so I'm not sure where would stand starting the process in our fourties.

[loira]

I'm sorry, it's a tough decision. I can commiserate because I had been open to having two before I experienced my losses, and my high risk pregnancy with A pretty much sealed the deal for me. While I was never set on a 2nd before, and we might have ended up OAD anyway, I do hate that I feel my body has made this decision for me. I agree with Shauni in that I personally would not take the risk, but of course the decision is yours and this board will be here for you either way.

[starryfish]

I developed severe pre-e with my first (was hospitalized and then they induced me at 36w and ended up in emergency c section). We are TTC#2 right now and I know that another pregnancy I will be closely monitored again for it (I am at risk for it due to a disease I have). I am confident in my OB's monitoring of me, she was very cautious with me and I appreciate it. Definitely talk to your OB and see what she recommends and maybe suggest doing 24 hour protein collections throughout your pregnancy to check for signs of HELLP. GL with whatever you decide.

[shauni27]

starryfish, I am glad you chimed in, I wanted to tag you but did not want to be intrusive.

[starryfish]

Jul 10, 2018 9:13:44 GMT -5 Waffles said:

shauni27, I always imagined having two kids but of course I didn't think it would take me 3 years to have the first so I can relativise in a sense. You can't always get what you want, right?

I personally wouldn't be open to fostering or surrogacy and adoption here is both very expensive and a lengthy process so I'm not sure where would stand starting the process in our fourties.

Feel free to pm me

[Waffles]

Thank you starryfish, I'll talk to my OB some more at my next appointment as she seemed pretty breezy about it in her message.

Thank you loira.

[shoeless]

Given your history, you might also ask if your OB would send you to a MFM in a future pregnancy and if so, can you talk to them first. I have a heart and genetic condition that makes pregnancy risky for me so MFMs handle my care from 11 weeks on wards, they were a lot more attentive and understood my conditions better than any OB I've ever had.

[starryfish]

Jul 11, 2018 10:55:09 GMT -5 shoeless said:

Given your history, you might also ask if your OB would send you to a MFM in a future pregnancy and if so, can you talk to them first. I have a heart and genetic condition that makes pregnancy risky for me so MFMs handle my care from 11 weeks on wards, they were a lot more attentive and understood my conditions better than any OB I've ever had.

yes or do periodic checks with the MFM. But I definitely suggest doing 24 hour urine collection throughout your pregnancy. They are annoying but give your Dr good information. I had to do them throughout my pregnancy and will do again in the future. 

[starryfish]

Jul 10, 2018 14:23:42 GMT -5 shauni27 said:

starryfish , I am glad you chimed in, I wanted to tag you but did not want to be intrusive.

I don't mind being tagged at all! Thanks :-)

[boiler717]

I have a friend who had her first son at 26/27w due to severe HELLP. She did go on to have a subsequent full term pregnancy without any BP issues. She was petite to begin with, but her BP is closely tied to her weight so I know she stayed really on top of her weight during the second pregnancy. She also did go on bedrest early third fri. she was monitored by MFM from pre-conception onward I believe.

[Waffles]

spearmintleaf - I'm sorry you went through that. It must be quite traumatic.

[Waffles]

Thank you for your replies. I will ask my OB to refer me to a specialist to at least discuss the risks/implications more in depth.

Considering I only gained 2kgs (was 20kgs overweight to start with) and I already was on lovenox, baby aspirin and bp meds, with my protein levels monitored I'm at a loss at what else could be done to give me a chance to avoid it a second time (bar from losing weight prior to getting pregnant, which I'm working on!) and that is what worries me the most.

What makes things harder is that though he does say he'll side with whatever I say, I know my H really wants more than one kid and I do worry he'll have a hard time with it if I don't want to go ahead with another one, especially as he doesn't realise how hard/expensive adoption would be.