Atypical HELLP Syndrome

[Mouschin]

Hello,

My name is Melissa and I am new here. I found this site after searching for support after my experience with HELLP and the death of our daughter Ava. This is our story.

My husband and I had an uneventful pregnancy. No high BP, no medical issues whatsoever. I was 27 years old, in great shape and had no risk factors whatsoever. I was 35 weeks pregnant and on February 7th 2011 started to experience some pain between my shoulder blades. I contacted my midwife, whom at this time we believed it was muscular problems (I had a busy weekend days before) as I had blood work taken 3 days before that was normal. The pain intensified and we went to our local hospital. The OB department said the baby was fine (we now know they were measuring my heartbeat and not Ava's) and they transferred me to the emergency department for care. In the emergency department, in excruciating pain, they discovered my platelets were dangerously low. At that point I was diagnosed with A typical HELLP Syndrome, as I had no high BP, just the pain and low platelets I was then transferred to a different hospital specializing in obstetrics. Upon arriving at the hospital they did an ultrasound to make sure Ava could be induced to safety get her out. It was then we were told they could not find a heartbeat.

The decision was made to continue with the induction, and the pain in my back continued to intensify. I was induced to 5 cm when my OB got a gut feeling after seeing bloodwork showing my liver enzymes were 3000, my platelets were 24 000. He ordered a CT scan. It was then they discovered a hematoma on my liver, 70% of my liver was covered in it, as well a rupture of 6 cm. I was bleeding out and they transferred me once more to a hospital where the leading liver specialist was waiting. Ava was delivered on February 8th 2011, my husband and families loving arms waiting for her.

I awoke two days and three surgeries later. My baby was gone, my life hanging in the balance. I am now home resting, attempting to find a new normal from the life we had built up until February 7th. We are working with a grief counsellor, and have more follow up with the liver specialist in days to come. Its incredibly difficult to grieve for your loss while dealing with the physical recovery on top of it all.

HELLP syndrome blindsided my husband and I, took our daughter from us and almost took my life. I am grateful to be alive but as of right now, do not know how to move forward.

[lilysmommymindy]

Omgosh I am so sorry for your loss, I can't even begin to imagine the emotional pain you're dealing with. It sounds like you've put up quite the fight to be alive today. I hate that you have to be welcomed to these forums but im glad you found them, hopefully you will.find the answers you are looking for here. Also, there is a grief and loss board that may be helpful as a support. Again, I am so sorry for your loss.
Take care,
Mindy

[bordergurl72]

I am so sorry for your loss, but hope for a quick recovery. Many positive thoughts for you and your husband!

[Mouschin]

Thank you for your kind responses. Its a day by day process.

[l412angel]

I am so so very sorry for your loss. I wish you the best in getting better!!! HUGS

[angieb]

I'm so very sorry for your loss.

I also had atypical HELLP, there aren't many of us out there that I've ran into, but I never had high blood pressure and did not spill protein. (Yet they still call my first pregnancy "severe pre-eclampsia & HELLP" which I don't really understand...) I had the pain for 4 weeks or so and saw my OB twice in those two weeks. When it got so bad I went to the hospital, my initial labs came back with my liver enzymes only slightly elevated, luckily we had other signs that something was off (daughter had already been diagnosed IUGR by that point and my AFP levels from the quad screen had come back elevated- that's the reason they figured out her IUGR actually- so if I hadn't done that quad screen, they probably wouldn't have taken me as seriously). Anyway, they did the bloodwork again 6 hours later and in that time my liver enzymes had more than doubled and my platelets had dropped by 100,000...it turns out we were pretty lucky that they caught it given the timeline although our daughter did not survive due to extreme prematurity.

I highly recommend infant loss support groups, there is also a great online baby loss mom's community, I found that learning everything that I can find about HELLP and pre-e helpful so I had more understanding of what happened (and meeting others with similar circumstances), and just taking it one day at a time...are all things that have helped me move forward. And also coming to the realization that to some extent there will be no moving forward, that we are forever changed and are not the same people we were 2 years ago before we'd watched our daughter die.

You and your family are in my thoughts and prayers as you go through this horrible time.

[jenprzygoda]

Other than a ton of swelling, I had no signs. I never had high BP or protein, so there was no PE until after my son was born. (went home with BP meds) My HELLP was diagnosed because I had severe upper right quadrant pain that they thought was just my son pushing on my ribs. They caught it because I had blood work the day before and it showed I was in the beginning stages of HELLP. I went straight to the hospital and they redid blood work and sent me in for the c-section right then. I wish you the best - having this thrown at you is awful and it is hard when you can't fully understand what happened to you. I often feel strange because my situation was not the typical HELLP.

[kvirl]

Hi all,

I guess I had a-typical HELLP syndrome. I was 35, healthy, exercised, ate well, etc. No blood pressure or proteinurea issues. I did start feeling pain in my upper right quadrant in my second trimester but was told that it was likely due to the baby pushing my ribs around (oddly, no other pregnant person I know told me they've been told that before. My mom thought I was crazy but if that is what the OBGYN said...). I eventually did start to swell in the legs/feet/hands sometimes but then it would go away. One night it didn't; I awoke with awful cramps, pain, vomiting, and was told by my OBGYN that I likely had the "flu". Unfortunately, it wasn't the flu and when I went to the hospital the next day I learned that I had a placental abruption with HELLP and kidney failure. We lost our little one that prior night most likely. Still haven't heard word one from my (now old) OBGYN who thought I had the flu.

Let's just say, I'm glad to have found a perinatologist at a fantastic hospital/teaching school in the SF Bay Area. If you live in that area, I suggest going to that wonderful and very caring/progressive institution!

Kristin

[Mouschin]

Thanks for all the support ladies. I have found this board to be extremely supportive. I have learned more about HELLP and the courage within all of us, through you. We lost our little girl just weeks ago, we take things moment by moment.

Kristen, I completely agree, it is all about finding the right doctor for you going forward. I am working towards doing so as we speak.

[ozierja]

I am so sorry for your loss. HELLP is so sneaky especially the upper right quadrant pain. I have seen it dismissed as heartburn, round ligament pain, braxton-hicks, baby moving or growing...etc. The best thing you can do is stay vigilant.
Please be easy on yourself.