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Miscarriage/Pregnancy Loss
HELLP syndrome + intro (long)
Hi Everyone-
So i've been a lurker for a while. Figured now is as good a time as any to introduce myself and tell my story.
I had a totally normal, easy breezey pregnancy in the beginning. At 21 weeks i began getting horrible upper abdominal pain that i chalked up to really bad heartburn. having no history of it before pregnancy, it was hard for me to tell if it was something more serious or just really bad indigestion/heartburn. (im also kind of a hypochondriac so i kept thinking i might just be being a baby) After a week and a half of dealing with everything i ate putting me in pain and none of the antacids the dr's told me to try working, i went to see my midwife who scheduled an US of my galbladder. I chalked it up to galstones cus i had alot of the symptoms i read about. Then i got a fever and got nervous i may have an infection, so that evening i had my husband take me to the ER. They brought me to labor and delivery and did blood work. My platelette were around 30,000 (300,000 is normal) and my liver enzymes were elevated. The dr had me stay in the hospital and the next day they brought in a GI dr and blood dr. Along with a dr from my practice, they did about a million tests and all came back negative, including for autoimmune diseases.
But i was too early for this to be HELLP so they continued to monitor me. The nurses called me the House case bc i prob needed a dr like House to figure me out. The pain kept coming every time i ate so i'd go days eating nothing. i didnt have the pre eclampsia many HELLP patients get first, and i was way too early to actually have HELLP (usually happens in the 3rd tri and the earliest case in my city was 28 wks) After a week of nothing conclusive, they transfered me to the local high-risk Perinatal hospital. The dr's there retested me and after 3 days diagnosed me as HELLP, although they'd never seen a case as early as 22 weeks. They said i did have all the symptoms- and that the pain was caused by my inflamed liver. i was an atypical case, but very sick and they only way to cure me was to deliver. I wanted to be able to hold out till 24 weeks to try and deliver the baby, even if fed through an IV but they also found a blood clot on my placenta which caused a placental abruption, and they determined the baby now had an IUGR causing him to be under sized. it was crazy bc at the 20 wk US to find out the sex (boy), everything was fine. But the dr said these things progress quickly, both the IUGR and HELLP syndrome.
I didn't have a choice but to deliver- its the only way i'd be healthy again. And if i had waited, i risked liver failure along with kidney failure. i didn't have high blood pressure, but it could happen fast, i was told. and the baby was under weight anyway so if i waited 2 wks and risked myself, the baby's chances of making it were slim. so they induced me and i had to deliver. the baby was stillborn and the entire thing took just a few hrs. i had a d&c after just to make sure no tissue was left behind and i got to go home the next day after 10 days in 2 hospitals.
i went through all the post partum symptoms without the payoff of having Luca home with me. We had to have a burial, and we now go visit his grave site every week. He was a tiny 9 oz born on Aprill 11- the day before DH's 30th b'day.
So now i have the OK to try again after my first cycle- which just came, and God is AF heavy! its awful. But i'm finally feeling pretty low. i delt with it very well before this. i have my follow up next week (should have been this week at 6 wks but AF came). i'm just feeling gross, and havent been able to work out. And jealous of all my pregnant friends. And scared somehting bad will happen again once i am preg.
i thought this would be a good place for support. and i was wondering if anyone else out there has gone through something similar.
This discussion has been closed.
Re: HELLP syndrome + intro (long)
Hi there. I am so very sorry for your loss and the whole experience you went through. I don't know much at all about HELLP, so I'm afraid I won't be of much help there. But I do want to tell you that this board is a wonderful source of support.
I have two very close friends that are pregnant too, and I can't help but be jealous. One is due about 6 weeks before what was my due date and the other is due just 10 days after what I would have been. Though it hurts to hear all of their updates, it's helpful in a way b/c I can kinda live vicariously through them, if that makes sense.
I wish you the best of luck when (and if) you are ready to try again. Right now, that thought is the only thing keeping me going. I am so focused on my two week post D&E follow up appt b/c I know I'll get the answer to when we can try again.
I'm so, so sorry you had to go through that. I also had HELLP with my first pregnancy, and it was the same symptoms - I only had very serious upper abdominal pain that I thought was heartburn. Thankfully I was later in my pregnancy (33+) and it was diagnosed quickly, so things turned out ok. I did a lot of research because I'm afraid of getting it again in future pregnancies, and I have never heard of it hitting before 27 weeks before. I cannot believe something like that had to happen to you, and I can't express enough how sorry I am.
I'm sure you know this already, but it never hurts to hear it again: There was nothing you could have done. There is no treatment for HELLP other than delivery, and it is still the leading cause of maternal death in the Western world because it's often not caught soon enough. My platelets were dropping at a rate of about 30,000 / 24 hours, and below 40,000 is considered critical, so you were already there and you likely would have died if you had waited longer. In my book, that is not a choice. You did the only thing you possibly could have done in the situation to save yourself (the result of HELLP is also a failure of the placenta, so Luca would have passed away before viability no matter what you did).
Again, I am very, very sorry for your loss and wish you a full, healthy 9-month pregnancy when you're ready again. If you're interested in medical articles on HELLP, you can PM me your e-mail address and I'll send some to you. The good news is that your chances better than 70% that you will not get it in subsequent pregnancies, and that if you do get it, it is almost always less severe and occurs later (I know that's not much consolation for someone who was outside the realm of what the doctors considered possible anyway, but maybe it helps a little??).
BFP1: DD1 born April 2011 at 34w1d via unplanned c/s due to HELLP, DVT 1 week PP
BFP3: DD2 born Feb 2013 at 38w4d via unplanned RCS due to uterine dehiscence
I just wanted to say I'm sorry for your loss of your son Luca. I had an experience very similar to yours, just a little later in the pregnancy. I was 36. Our NT scan was on the high side, our son's brain was not developing properly, he had a hole in his heart and there started to be signs of IUGR around 20wks and we suspected Down Syndrome. My outward symptoms started at about 30 wks. Had the terrible pain that only came at night that I figured must be bad heartburn, with a residual stabbing pain through to my back all day. Nothing helped any of that though. Mr dr saw me at 32 wks and I had an u/s of my gallbladder, nothing there. At 33 wks, I had a NST with the peri and he didn't like the results. I went to L&D for monitoring where I now had protein in my urine, very high bp, and very low platelets. I had an emergency c/s 3 hours later.
I was in the hospital for 5 days after and my liver function was still not perfect when I left, but it was trending upwards so they let me leave. My son was diagnosed with Trisomy 13 and this is what I was told by my doctors: sometimes, women who are carrying a child with a chromosome disorder will develop HELLP and it is atypical, comes on suddenly and does not present itself as usual. I'm not trying to suggest that may have been the cause for you, but it definitely was for me. My dr has been delivering for 30 years and hadn't seen anything like my situation (and I live in a fairly large city). I was told that I have a higher risk of developing HELLP with future pregnancies, only because I have had it before, but that more than likely it was brought on by the fact that my son was sick in my case.
I am very sorry for your loss, and I hope that HELLP does not repeat itself with you future pregnancies. I know that it is just one more terrible thing to worry about for when you do become pregnant again, and none of us need the added stress. I wish you the best of luck.
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