HELLP Syndrome Mommies

[smiller1404]

First baby - severe preeclampsia. Induction that ended up in c section at 38 weeks.
Second baby - severe HELLP. I had an emergency section at 34 weeks. Kidney failure that lasted 4 days, swollen brain and eyes (ended up with glasses), blood pressure in the 200s, platelets dropped to next to nothing, 6 blood transfusions and 13 plasma exchange treatments.

Now I know it's obviously not wise to EVER be pregnant again.. My baby is now 5 months old but it's killing me inside thinking I'll never be able to have another baby. 3 was my number, I'm so thankful for my two healthy boys and I can't risk leaving them behind. My entire life has been obsessing over pregnancy and babies. I just need a little hope, has anyone ever gone on to have a healthy normal pregnancy after a severe HELLP/TTP episode?

 

[Dinah93]

Thank you for your post. We have many similarities. 3 was my number too. Pre-e/HELLP sucks! And I refuse to use a more mature or articulate word because it doesn't deserve one. My first was pre-e and HELLP, platelets dropped by over 150 in the space of 6 hours, I started to hallucinate, she was born at 28+0. My second was pre-e and hellp free, I was much healthier, but I still had high blood pressure and as a result the flow through the cord became so restricted it went into reverse and my son was born at 29+1. I too am having a very hard time adjusting to the idea that we're done, I still want one more so much. There's nowhere on the forum for people to go to talk about being done against their desires and I wish there was. Have you had a meeting with your obstetrician to discuss the safety of another pregnancy? I met with mine and he told me he liked a challenge, he wouldn't tell me not to, but I knew how it was going to end up, he'd be amazed if I ever made 31 weeks. I've had experiences of a very rough nicu stay, and a pretty smooth one, but both my babies came home, and I'm terrified if I'm greedy and roll the dice again that baby either won't make it or be severely disabled and that would be my fault, and my existing children would have to live with the consequences.

My obstetrician did tell me my chance of pre-e/cord restriction was about 90% in future pregnancies, but actually HELLP is only around 10%. Once you've had it once they watch you like a hawk and so the first signs you show of developing it the baby comes out. I used home kits to monitor the protein in my urine this time, and a home bp monitor obviously. I emailed my consultant at all hours of the day and night and we tweaked my medication often twice a week from around 20 weeks to try to keep it below 140/100 (by the end I was on max dose of labetalol, nifedipine and methyldopa, the residents were too scared to do anything with me without a consultant's say so as they'd never seen anyone on a dose so high, and yet my bp was still 160/110 in my second pregnancy and 195/128 in the first).

 

[smiller1404]

PreE and HELLP do suck. Both of my babies have been just fine so I have hope my 3rd would be too. However, I can't exactly leave them Mommy-less. This second time everything happened in a matter of minutes where it took DAYS the first time. First time I was falling asleep and 'dreaming' between contractions not even a minute apart. I didn't have time for that this time... The amount of pain in my head, I have never experienced pain like that.

I did talk to my obgyn at my 6 week checkup. However that was the last time I saw her as she went by to school to be a high risk baby Dr. She told me to think long and hard about having another, it is possible but there are obviously high risks involved. She told me if I am serious about having another, talk to her in a couple years.. Let my body heal and enjoy the boys and let them grow. There's things we can do before and during to try to prevent the preE stuff. If we can avoid that, we would be set. I just don't know if I could PURPOSELY do that to myself or another baby. Obviously I'm not ready to do it right now and I'm afraid I never will be. It's a disgusting feeling knowing your body can't do what it's suppose to. I'm just hoping and praying that maybe one day, I'll be ready and the drs will be willing to work with me. Team work OR if I could find a surrogate, I would be open to that as well. I just feel like I can't be done. It's not an easy thing to accept.

 

[ashleypauline]

I never had HELLP but my cousin did with her first baby. She was very scared of having another but her dr said her chances of having HELLP again was so very low and she went on to have a great pregnancy

 

[smiller1404]

It's good to hear that! They told me after first baby, chances of having pre eclampsia with the second are slimmer and well it was 100 x worse second time. It just terrifies me to think what took days the first time took minutes the second time and they almost lost is then... What if next time it takes seconds. Everyone has recommended me not to have anymore except my obgyn. I don't know if she was just giving me a little hope thinking I'll change my mind lol

 

[supertabby]

I had HELLP though less severe than your experience, I was still on magnesium sulfate for 3 days and had emcs but I was fortunate to escape organ failure. My daughter thankfully was healthy and term as I was late onset.

I struggled a long time with PTSD and really didn't want another baby, I was too scared. My husband did want another (although he was scared too) and as a compromise we went to see a specialist to debrief my medical notes and talk about future risks. She estimated a 10% chance of getting it again and ran through how they'd monitor me more closely etc. Eventually after nearly 2 years I felt ready to try and I had a healthy pregnancy (I took aspirin daily throughout pregnancy but who knows if it made the difference, some women also get prescribed lovenox or calcium too). I keep feeling broody for a third but that's mostly missing the bump really - not sure I want more children than hands! But there's an element of "we got two babies and I didn't die, so let's not push our luck".

From talking to other women with HELLP it seems that the chances of getting it again are around 10% but the earlier trimester or more severe cases seem to be the ones more likely to have a reoccurrence.

I'm part of a group on Facebook called HELLP syndrome survivors. It's a really helpful group, there are women who've had all kinds of experiences and sadly some losses, but there will be lots of mums who are in the same boat as you who may have better advice than me. If you can't find it feel free to PM me your email and I'll add you.

 

[smiller1404]

I will definitely look up the group ! Thank you.. It's just with my poor history, it feels hopeless and guarenteed. After two horrible endings to pregnancies, I don't want to risk leaving my two boys behind but I want another soo bad (not now but eventually) and the thought of never having another just eats me alive inside.