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8 weeks later and I'm "google-ing" HELLP

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

8 weeks later and I'm "google-ing" HELLP

Postby Lee2011 » Fri May 13, 2011 08:51 am

by Lee2011 (30 Posts), Fri May 13, 2011 08:51 am

and I came across this board - I'm sure I'll spend the next few days reading posts as I want to find out as much as I can about HELLP and to do what I can to help other people with it, but in the meantime here is my story:

Baby Lee's birth story I guess starts at 34weeks, when my platelet count started to drop; by 38 weeks it was below 80 and we had been advised that epidural would not be possible. By 9 days before my due date, my blood pressure was rising (although still within normal bounds) and extra blood tests were ordered. The result of these showed that my liver function results were >8 times higher than normal and I was called in for an emergency induction.

I was given one dose of induction meds about 6pm and my waters broke naturally at 1pm. I tried gas and air but it made me light headed and I'm not convinced it helped with the pain. I had just asked for pethidine (something I was keen to avoid) when the midwife realised that the pain had changed and I wanted to push; so it was too late. Over an hour later, forceps were used to turn him slightly and help him out into the world at 8:19am on Saturday the 12th March, screaming loudly and weighing 3.5kg.

[This next bit is from my husband's recollection.] About an hour after the birth my pulse skyrocketed and I started complaining of lightheadedness and turned very pale. Saline and various things were pumped into me while the doctors tried to work out what the problem was; I wasn't complaining of any pain and that confused them. The first thing I remember is two doctors, an anaethetist and two midwives standing round my bed. 24 hours later - with abdominal and chest scans, more blood tests than I could count and some blood tranfusions they had decided that I had a blood clot in the birth canal and I was taken into theatre under general anathesetic to remove a 400ml blood clot, luckily they didn'y have to open me up through my tummy. After that, with the help of more blood transfusions recovery proceeded smoothly, but slowly and I was only transferred up to maternity ward 3 days later and home 9 days after the birth.

After the immediate panic of my health passed (baby Lee was healthy throughout and well and truly spoilt by the hospital staff) attention turned to the fact that I had no wrist control and limited finger control in both hands (but no pain). After being examined by what seemed like every medical doctor and registrar possible and finally given an MRI scan and passed over to neuro-consultant the diagnosis is that I had damaged both radial nerves somewhere between my neck and top of arm (presumably due to the prolonged pushing stage, complicated by HELLP). Six weeks later I finally regained full wrist and finger movement and am now working on regaining strength.

Looking back, now 8 weeks later, it is obvious that HELLP started to develop <32 weeks, as this was when I started having pain below my ribs - despite the long recovery (and the incredible frustration of my hands) I remain thankful that it was not picked up sooner, as it had a happy ending for me and Lee.
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Re: 8 weeks later and I'm "google-ing" HELLP

Postby heather j » Fri May 13, 2011 08:48 pm

by heather j (4882 Posts), Fri May 13, 2011 08:48 pm

Welcome to the boards, though we always hate the circumstances that bring new members here. First, congratulations on the birth of your baby. Second, the fact that you're only eight weeks out and processing all of this is remarkable as it I'm sure every second was traumatic for you. My experience with HELLP was during my first pregnancy. I began experiencing elevated blood pressures around the 28 week mark,was on strict left-sided bed rest at 32 weeks, and was delivering the evening I turned 36 weeks. I didn't develop HELLP, based on labs, until 12-24 hours postpartum, but my cesarean delivery was prompted by an abruption. My delivery was very, very smooth given the circumstances, but I remember very little from that point until around 48 hours postpartum. It was the time that I can't clearly remember that I was most critical. It took a long time for me to be able to think about the events leading to delivery, delivery, postpartum, and - to be honest - the entire pregnancy without becoming very emotional. I found the PF forums almost two years after my experience, and it was a lifeline. For the first time, I didn't feel like an outsider and what I found here in terms of experience, education, and support has been invaluable. I'm still here almost five years later. I hope you'll make yourself at home and read as much as you can. Everyone here is so willing to help and there's always a virtual shoulder to lean on. :) I know processing all that has happened to you will take time, but the fact that you're here and talking about will help you in that process. Best wishes to you and your little guy!
Heather (PAI-1 4G/4G) mama to:
Nicolas Edison (6/2004) 36 weeks, PE, HELLP, and placental abruption
Ella Amelia (3/2007) 37 weeks, lovenox, PE-free
Oliver Lyon (1/2011) 37 weeks, lovenox, PE-free
Milo Mason (2/2014) 39 weeks PE-free
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Re: 8 weeks later and I'm "google-ing" HELLP

Postby catherine » Sat May 14, 2011 08:02 am

by catherine (2832 Posts), Sat May 14, 2011 08:02 am

What a marathon for you! The force of the Google is very strong and I'm glad it brought you to us! When I did the same thing after I had HELLP all I found were a few scientific articles....and me, thinly disguised as case conference notes! (this was pre-HIPPA and would never happen now). I found these forums when I got pregnant again and I can't begin to tell you how great it was to have these women as a source of support and information.
Mom to Finn, Lucy (HELLP syndrome) and Chloe
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Re: 8 weeks later and I'm "google-ing" HELLP

Postby Lee2011 » Wed Jul 20, 2011 09:06 am

by Lee2011 (30 Posts), Wed Jul 20, 2011 09:06 am

Just wanted to update. It's now just over 4 months since the birth of my son, we are both healthy :)

I have finally been discharged from Obs; their final verdict was severe atypical class 1 HELLP (it turns out my labs were worse than we were initially told, with liver functions between 50 and 100 times normal limits and my platelet count bottoming out at 37!). I have not yet been discharged from Neuro, as we are awaiting genetic tests for Hereditary neuropathy with liability to pressure palsy (http://en.wikipedia.org/wiki/Hereditary ... sure_palsy); although even if these test come back positive it alone would not be enough to have caused the nerve damage.

My emotions are probably more extreme than they were when I wrote my inital post; the realisation of how close I came to losing my own life and that of my son; plus the fact that my Neuro consultant thought that the control of my wrists and hands would not return (they luckily kept this from us at the time) hits me from time to time and I'm sure will continue to do so.
Mother to baby boy Lee born 12/3/2011 after emergency induction at 38weeks following diagnosis of severe atypical HELLP syndrome. Having come within hours of losing both our lives every smile is a celebration.
Baby sister Paige c-sectioned at 38 weeks with no signs of HELLP :)
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Re: 8 weeks later and I'm "google-ing" HELLP

Postby blythe » Thu Jul 21, 2011 11:32 am

by blythe (3060 Posts), Thu Jul 21, 2011 11:32 am

Thank you for the update! I'm sorry you're still having some ongoing issues, but I'm glad you and your son are generally healthy! I think just about everyone here understands the emotional rollercoaster involved in recovery after these difficult pregnancies / deliveries. We're always here to listen and share, and I'd also encourage you to read old posts about PTSD - I think you'll find a lot of information and commonality there.
Heather, mom to
#1 7-18-03 - 5#8oz 37 weeks PE/PIH
#2 8-11-06 - 6#14oz 37 weeks PE/PIH
#3 9-10-09 - 5#10oz 37 weeks PE/PIH
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Re: 8 weeks later and I'm "google-ing" HELLP

Postby lilysmommymindy » Tue Jul 26, 2011 10:39 pm

by lilysmommymindy (258 Posts), Tue Jul 26, 2011 10:39 pm

Sorry that I'm four months late welcoming you to our boards! I hope you've found answers to questions and feel impowered by our stories. I'm glad you are both healthy and hope your continuing problems resolve soon! These boards helped me tremendously after my experience with HELLP and hope they have/will for you too! Take care!
Mindy
Mindy

DD#1 Lily Adrianna: 8/28/08 Born 36wks 0days due to Class 2 HELLP Syndrome and Severe Preeclampsia via csection. 4lbs 10oz 17in
Fortunate to have a healthy baby and mommy, no NICU needed.

DD#2: Tatum Nicole: 8/6/10 Born 39wks 5days Scheduled CSection Preeclampsia and HELLP FREE!
7lbs 3oz 20in
Took Baby Asprin between weeks 20-36 and was co-monitored by MFM & OBGYN
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