My story and my thanks to all of YOU!

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

My story and my thanks to all of YOU!

Postby LizzieF » Tue Mar 15, 2011 09:49 am

I discovered I had HELLP at 33 weeks and it was only because I thought I was having gallbladder attacks. The pain in the upper right-hand side of my chest was excruciating. It happened to me twice, and the second time, I was also throwing up. I had terrible acid reflux issues during my entire pregnancy, but believed (and was told by my OB) that this is the norm for any pregnancy. I was popping Tums like no tomorrow. I'm interested to read that many of you had back pain on the upper sides of your bodies--I did too. I was going to my OB every two-threeweeks (since I'm over 35 and this was my first pregnancy), and my blood pressure was absolutely fine. I had even had an ultrasound 4 days before I went to the maternity ward's triage, and although the baby was small, no problems were detected at that point.

When I arrived at the triage, I really believed that my gallbladder was the issue, or that maybe I was just being silly for being there at all. They did a barrage of tests, and when the nurse told me gently "You understand that you're not going home, right?", I just couldn't believe it. I was admitted, and the goal was to get me to 35 weeks and then induce me. My BP was not overly bad, but my liver enzymes were very high and my Blood platelet count was low. I had no idea how serious it could get, even though I had the time to do the research. I guess I had the blinkers on, because research is part of my job, so I don't know how I missed this site. Two days before my scheduled induction, I suddenly developed the worst headache I've had in my life and began throwing up. Of course, I was already in hospital, which was good--but this was happening at night when all of the high risk md's were gone for the day, and the senior resident on staff decided to induce me instead of moving to a c-section right away. I think that was a big mistake. They were monitoring my BP and all of the various counts, but honestly--when it kicked off, it REALLY kicked off. I couldn't even talk, I was so ill. After 5 hours, my BP went through the roof (200/100) and it was time for my emergency c-section. What followed was the most terrifying 1 1/2 hours of my life.

I'd been in hospital for two weeks, having my blood taken twice a day every day. The anesthesiologists (there were 3) working on me could not find any viable veins. My blood platelet count was so low that I needed both a blood and a platelet transfusion.They were slapping my arms, my feet, using an ultrasound to find my veins, whatever they could try! They were trying to thread stents into both of my wrists for so long. Now they were worried that I would bleed out, so they transferred me to a regular OR, not just the maternity c-section room. My poor hubby was kept out, of course, and was frantic with worry. I just lay there on the gurney while they worked on me...it was terrifying. The nurses kept saying things like "You're doing so well sweetheart" and I would just nod and stare at the ceiling while inside I was screaming in pain and totally convinced that I was going to die and my baby was not going to have a mother. The interesting thing was that by now it was 8:00 a.m, and a shift change happened. The three male anesthesiologists that had been unsuccessfully trying to find veins for an hour were replaced by three female anesthesiologists...and they had the stents in place within 20 minutes! Go girls! One in my left foot, one on my main wrist artery and one on my throat. The last thing I remember is the nurse putting the iodine on my tummy...

...and I woke up in the ICU very late that same day. My daughter, Charlotte, had been delivered at 8:28 am, weighing 4.4 lbs. She was in an incubator in the NICU, but was very strong and doing well. On my second day in the ICU, they brought her down to me (she was out of the incubator, obviously!) and I was able to breastfeed her briefly. There are pictures of me meeting her and I look so awful, so out of it. But she was bright-eyed and very alert! She's been like that since day one--very feisty. They called her "super preemie" in the NICU. I spent three days in the ICU and even had an MRI because of the crazy visual disturbances and colour-washes/floaters that I had. Thankfully all was normal on that front. Vision-wise, I had severe macular edema, and my retinas had detached (although thankfully they did not tear) from the pressure.

Thinking about what happened to me still can make me well up. I am so lucky to be here and so thankful that my daughter survived and is thriving. Three months on, my vision is about 95% what it was, but I'm hopeful that it will return to normal. I fought like crazy to breastfeed, and was eventually successful at establishing this--it took a great deal of work because my body just felt so broken down. On the HELLP front, the specialist that I saw afterwards said that there is always an chance that HELLP could occur again in a second pregnancy, but that they would put me on baby aspirin at 10 weeks and monitor me. I also asked him about the new theories that pre-eclampsia and HELLP are early warning signs of higher than average risks of stroke and heart disease--he got very excited by the question and said that this was his line of research, his baby, and no he didn't think that I fit that category. Apparently my placenta didn't exhibit the kind of vascular issues that most HELLP/Pre-Eclampsia sufferers do. (At least that's what I got from the conversation--he didn't give me alot of detail, to be honest). Good to know that my placenta went to further scientific research! ;)

Finding this site, and this board has been immensely helpful. To those of you who lost their precious babies...honestly there are no words. I cry every time I come to this site and read your stories. I cry at the success stories, too because it brings back memories. I am so grateful that both me and my daughter are doing ok. We're all survivors and we share a bond, even though we'll never meet. Thank you, ladies, for bringing HELLP and Pre-eclampsia to light and sharing your thoughts and stories with me!
LizzieF
Registered User
 
Posts: 5
Joined: Sat Jan 01, 2011 05:52 pm

Re: My story and my thanks to all of YOU!

Postby angieb » Wed Mar 16, 2011 06:36 am

I don't understand why they didn't deliver you after admission when they discovered your low platelets and high liver enzymes? (The typical standard of care is HELLP= steroid shots and immediate delivery). I would be asking a lot of doctors a lot of questions in hindsight, we have way too many stories similar to yours here that end with stillborn babies (with or without placental abruptions). I'm not a doctor but I really can't believe your doctors knew you had HELLP and still tried to prolong your pregnancy, don't get me wrong, I'm very glad that it ended up working out for you and that your daughter is okay...I just don't really understand why they took that risk I guess. (Granted, I'm not anything close to a doctor or medical professional and I probably don't know the full story. But your story has me a bit \shocked.) Did they give you steroid shots at all?

It sounds like you have talked to a good specialist and that's definitely a good thing. And again, I'm so glad you and your daughter are okay. Second pregnancies are definitely always nerve wrecking but often better.

Welcome to this website!
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/
angieb
Registered User
 
Posts: 1192
Joined: Mon Sep 28, 2009 01:38 am

Re: My story and my thanks to all of YOU!

Postby LizzieF » Wed Mar 16, 2011 09:59 am

Thanks for the welcome message! And yes, you raise some valid points of concern. I do have alot of "hindsight" questions, and end up replaying the whole month-long ordeal over and over in my mind. The doctors had a very thick binder on me, and I'd love to actually see what my results were on a day to day basis in the lead-up to the delivery. My OB even thought that I should be allowed to go home ( :shock: ) but the high risk doctors, thankfully, nixed that. Perhaps my liver and platelet counts were considered "manageable" under supervision. I did have the steroid shots as soon as I was admitted, and had fetal monitoring on a daily basis. I had atypical HELLP, with normal BP readings that started to climb gradually. Were unnecessary risks taken? I'm starting to believe this after finding this forum. Certainly the night that everything kicked off, the decision to induce me was clearly the wrong one. They should have taken me right to the c-section delivery room. Even the "experts" can get it wrong, I guess; but it would have been me and my daughter paying the price if things had worked out differently.
LizzieF
Registered User
 
Posts: 5
Joined: Sat Jan 01, 2011 05:52 pm

Re: My story and my thanks to all of YOU!

Postby angieb » Wed Mar 16, 2011 10:48 am

I actually only had HELLP with no high bp, but my doctors never waited around for my blood pressure to get high, it didn't get high even when my labs were at class I levels, so they think I probably would have had my liver rupture, started seizing, and died within a few days or so, had we not delivered when we did. (And my OB was calling every MFM she knew for extra opinions and anything that could buy us some time, they all agreed with the MFM at the hospital that immediate delivery was the only option.It got worse after delivery before it got better.) It really does depend I guess what your numbers started at and how they were dropping, but really, most doctors are very conservative with HELLP and deliver regardless of if it's class I (most severe) or class III (least severe), and regardless of what your blood pressure was doing. HELLP= delivery, your story is the only one I've ever seen on here where they knew it was HELLP and didn't deliver, and especially that didn't end tragically. I'd definitely get a copy of your medical records and have a consult with a different group of MFM's.

And with either HELLP and/or pre-e, they actually do prefer induction and vaginal delivery vs. c-section when it's possible (especially with low platelets, etc.), so that's not really a call that they made that I'd really question though obviously it wasn't the right call in your situation. I can only think that your numbers must have been awfully stable for them to let you stay like that for so long. (Although I'd still question why they were only checking them 2x a day. I was having bloodwork every 6 hours and believe me, my numbers quickly changed every 6 hours, if they'd only been checking twice a day, it would have gotten extremely ugly for me very quickly.)

Anyway, like I said, I'm very glad it turned out okay for you and your daughter.
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/
angieb
Registered User
 
Posts: 1192
Joined: Mon Sep 28, 2009 01:38 am

Re: My story and my thanks to all of YOU!

Postby l412angel » Wed Mar 16, 2011 08:58 pm

So sorry you had to experience all of that. I am so very glad you and your daughter are ok! I honestly did not feel better from PE until about 4 months out.
Laura Angel (Factor V Leiden)
Mommy to Cara Angel 2LBS 11OZ 16 IN. Born at 30 weeks due to Severe PE & HELLP.
"My life went with you sweetheart the day angels called you home"

Our Rainbow Baby Carter born March 5 2011 7lbs 7oz 20.5in 36 weeks 4days PE FREE

Baby #3 due June 2012
User avatar
l412angel
Registered User
 
Posts: 1746
Joined: Thu Nov 19, 2009 02:46 pm
Location: Illinois

Re: My story and my thanks to all of YOU!

Postby danielsmom » Thu Mar 17, 2011 05:47 pm

LizzieF, thanks for posting your story, and you had me terrified reading it that it would end with a stillborn baby. That's scary stuff girl.

Another specifically interesting thing to me was that you showed signs of HELLP two weeks before delivery. That hit a familiar bone with me. I had the same pain, throwing up too - it is so excruciating that you can barely breathe much less talk - and mine showed up two weeks before delivery too. Doctors have told me that I've imagined it, or it was gastritis of some sort, not HELLP, because if it was HELLP, my baby and I wouldn't have survived that long. Well, anything is possible with God right? They had me eating Tums too, which didn't help. I had my gall bladder checked out after delivery (before being discharged) and it was fine. I was in the hospital for 3 days prior to delivery, and they drew 27 viles of blood in that time. I don't know if they ran the HELLP test earlier, but once it was determined I had HELLP, we were off for emergency C-section.

Also, for what it's worth, I just had gall bladder attacks/removal in October, and it's the same horrid pain, maybe less vomiting though.

And, you totally rock succeeding with breastfeeding! That is the hardest thing when you've been really sick and gone through surgery, but it's so worth it. I breastfed for a few months, but Daniel was so growth restricted (4 lb 4 oz at 40 weeks when he got to come home) that I couldn't handle worrying that he wasn't getting enough. So I pumped for a year. His growth caught up and then some and he never got sick until after his 1st birthday!
Miscarriage Feb 05 & Dec 07
Daniel born Feb 09 at 27w5d, 1 lb 1 oz/12 inches (severe IUGR) due to Severe Pre-E & HELLP. Now tall for age and no complications.
Diagnosed with MTHFR
Cornual Ectopic miscarriage Mar 11
Natalie born 6-5-12 at full term, 7 lb 11 oz & 21.5 inches, progesterone 2-8 weeks (for suspected luteal phase defect), lovenox 6-29 weeks, lda 0-36 weeks, folic.
User avatar
danielsmom
Registered User
 
Posts: 290
Joined: Wed Jun 30, 2010 12:17 am

Re: My story and my thanks to all of YOU!

Postby LizzieF » Sat Mar 19, 2011 09:06 am

And, you totally rock succeeding with breastfeeding! That is the hardest thing when you've been really sick and gone through surgery, but it's so worth it.

Thanks so much! I almost quit a few times; but the fact that so much had been taken out of hands made me more determined. If I was going to put her on formula, it was going to be MY choice...She's now 16 weeks and getting close to 10lbs! So proud of her...Of course, now she doesn't remember how to take a bottle properly, but that's something we can work on.
LizzieF
Registered User
 
Posts: 5
Joined: Sat Jan 01, 2011 05:52 pm

Re: My story and my thanks to all of YOU!

Postby lilysmommymindy » Mon Mar 21, 2011 09:05 am

Congrats on your baby! Thank you for sharing your story and yes you can have a normal pregancy after HELLP, there are risks, but it is possible!!! :D Breastfeeding is so tough, but it gets easier by the day and it sounds like you've really gotten the hang of it, congrats! You're LO has and will thrive so much from your milk...my DD was 4lbs 10oz at 36 wks 0 days and is now a 2-year-old who is bigger than almost all kids her age. You'd never know by looking at her how tiny she was at birth. My bff says she should be the breastfeeding poster child! Anyway, welcome to the board! Congrats, again!
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
User avatar
lilysmommymindy
Registered User
 
Posts: 258
Joined: Wed May 06, 2009 10:18 am

Re: My story and my thanks to all of YOU!

Postby johanna8683 » Tue Mar 22, 2011 03:14 am

LizzieF,

Thank you for sharing your story. The similarities to my story almost had me crying again. I too tend to cry at the unfortunate endings and the success stories, even the ones I've read before. Being emotional and crying about a stranger's story is awkward and something I would never have done before having HELLP. But HELLP changes us in so many ways. I also struggled / am struggling greatly with the loss of control and helplessness I experienced... and mine was a success story.

I've posted a detailed story somewhere in the forums already. But I'll summarize now. My atypical HELLP symptoms began at 37wks. I experienced the referred pain in my back; so my OB called it early labor. She had been dismissing my heartburn throughout the pregnancy; she also dismissed the slight rise in BP, which was high for me but still within the "normal" range. After 2wks of "early labor" events, which were several hour stretches of intense back pain, vomiting, and dysfunctional contractions, I decided it was time for an induction. After being admitted, I was diagnosed with HELLP. My platelets were on the border between minor and moderate class HELLP. They rushed the induction, but did not suggest a c-section. My son was born within 10hrs of my arrival at the hospital. The "what ifs" drive me crazy sometimes. What if I hadn't decided to be induced? What if I hadn't been taking therapeutic doses of Lovenox? What if I had let the admitting nurse send me home without calling my OB? My platelets dropped lower and my liver functions were worse after delivery. How fast would the situation have gotten worse? I had a couple episodes of back pain after delivery too; I was able to watch my BP jump up during those episodes. I don't recall how high it was though; and, it wasn't recorded in the records that I requested from the hospital.

I had been told how dangerous HELLP was while in the hospital; I could tell my husband was scared after reading information online while I was in the hospital. But it didn't register until several weeks postpartum. I'm still coming to grips with it while we discuss future pregnancies. Honestly, I think it was a safety mechanism; my brain didn't accept the danger and risks because I wouldn't have handled it well. For me the emotional healing from HELLP is taking a lot longer than the physical healing. The Preeclampsia Foundation website, in particular these forums, has facilitated the emotional healing. Once again, thank you for sharing your story. And congratulations for your daughter.
JoHanna, DVT and HELLP survivor, living and loving her lucky little Leland, who made it to full-term to be born on 8-9-10. Married to a supportive husband and wonderful father who puts up with her obsessing over HELLP on a regular basis. Wanting to conceive again but still worrying about the "what if's" ... being an empathetic pessimist doesn't help.
johanna8683
Registered User
 
Posts: 3
Joined: Fri Mar 11, 2011 07:31 am
Location: Pasadena, CA


Return to HELLP Syndrome Survivors and Underlying Disorders

Who is online

Users browsing this forum: No registered users and 1 guest