Currently recovering

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
User avatar
Forum Moderator
Posts: 10203
Joined: Fri Jun 25, 2004 06:36 am

Re: Currently recovering

Postby caryn » Sat Aug 11, 2012 11:07 am

Welcome to the forums - I'm glad you've found us.

These syndromes are terribly unfair, as you've found out. Women who just want a baby of their own, or who just want to help women who can't have a baby of their own, end up blindsided by a runaway immune response and find themselves in multiple organ failure in ICU. So that's always rough, and here you'll find other women who get that viscerally. While companions don't make it more fair, I like to think it's good news of a sort. We've got a club, and you're in it.

Not only is this a difficult condition to explain, but docs don't usually think they have *time* to explain it. They're too worried that their patient/s are going to die right now if they don't get to work (and with us that often means disappearing to dive neck-deep into research literature looking for the current information on therapies.) So we find ourselves trusting the authorities to know what's safest for us on the basis of our past experience but little framework about this new problem. Families find us after the trainwreck when they're trying to figure out what the heck just happened.

Some women do unmask their genetic hypertension trait with one of these pregnancies, and the only way to find out is to wait and see what happens to you. To some extent, every pregnancy remodels our bodies, and these pregnancies more than most. The competing interests of mother and fetus are not aligned even in a gestation where the genetics are 50% familiar. Here's a recent Slate article on the oddness that is pregnancy...

Please feel free to ask for links to any information and to ask for any support you need, and welcome again!
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy

Registered User
Posts: 1
Joined: Fri Aug 10, 2012 11:28 pm

Currently recovering

Postby surromomGSx1 » Sat Aug 11, 2012 00:19 am

Hi my name is Heather and I thought I would share my story. I have three children and had three very uneventful pregnancies and deliveries. I feel very blessed that my children were all full term (two were even post-term) and free of any complications. It is because of these textbook pregnancies that I decided to become a gestational surrogate. I knew my family was complete but I love being pregnant and thought I could help another couple experience the joy of parenthood that my husband and I have enjoyed.

I met my IPs (Intended parents) through a matching website and we hit it off right away. Both are incredible people and were so excited about the prospect of becoming parents. We went through the process and two embryos were transferred and then we waited. Both babies took and we were all excited that they were going to have twins. The rest of my pregnancy was very uneventful. Both girls measured well and all my checkups were, well, textbook.

Near the end of the pregnancy I noticed my feet were really swollen and achy, but since I was carrying twins it was to be expected. We also thought the swelling in my hands and face was just due to putting on pregnancy weight. I never had protein in my urine and my BP stayed pretty normal. I had one BP at 37 weeks that was "slightly elevated." At 37 weeks 2 days I went into labor. I went into L&D and my BP was a little high. I got to 4 cm dilated and then my labor stalled. They were a little concerned about my BP but thought it could be reading high because of the pain of labor. They checked it again after the labor stalled and it was normal so I was sent home.

At my 38 week appointment my OB was concerned that the girls were not weighing the same anymore, baby A seemed to not be growing as well as baby B. He decided it was time to induce. After spending almost a week at 4 cm I had to agree. When I went in for induction they noticed my BP was higher than normal and decided that since I was progressing through labor so quickly and nicely that they would wait until after delivery and then put me on mag. Both girls were born vaginally and within about 15 minutes of being complete. They scored almost perfect on the Apgar scale and though baby A was a pound and a half lighter than baby B they were both perfectly healthy at 5 lbs 9 oz and 6 lbs 14 oz. They went to their ecstatic and tearful mommy and daddy. I must say it was one of my proudest moments. Then I got put on mag and put on the high-risk floor.
I don't need to tell you all how horrible the mag is. But finally after 24 hours of mag * I was taken off and allowed to start to feel better. My BP continued to rise and at this point my labs showed elevated liver enzymes and lowered platelets. However no one told me what this meant. All they said was I was showing signs of PE. I was given Labadalol to lower my BP and numerous times was given Hydrolozene through my IV when it spiked too high. After 24 hours like this a doctor in the same practice as my doctor decided I would be fine to go home with no meds since "usually" BPs regulate after 24 hours. So I went home and the babies went home with their mom and dad.

I spent one day at home but still did not feel right. The next day a friend came over to bring us dinner and visit for a few minutes. While she was there I started getting a horrible headache and for the first time I saw the "sparklies." I told my husband that this did not seem good and I did not want to go somewhere to have my BP checked because I didn't feel good. So he went to CVS and bought an at home BP monitor. The first time he took it it was 204/107. He thought maybe he did it wrong so he tried it on himself...112/67. He tried it on me again 206/104. We called the doctor on call and were told we probably took it wrong but to go to the ER just in case. When we got to the ER my BP was 212/114 I was whisked back to a room and immediately put on mag again. My labs were taken again and again I had high liver enzymes and low platelets. I was sent up to the high risk floor again and was greeted by one of the nurses I had had just days earlier. She told me she was surprised that the doctor had sent me home with no meds but that she was not surprised to see me back. When she looked at my chart she said I was really lucky that I had not seized or stroked out before I got to the ER. I got another round of mag, this time for 32 hours, and spent the next 5 days in the hospital. My BP bounced between the 140s/90-170s/100s. I was put back on Labadalol, then had the dose increased, then they added Procardia. Then finally that seemed to do the trick. I finally got to come home this past Friday and still at that point no one ever explained to my husband or me how serious my condition was nor was HELLP ever mentioned.

I went in on Tuesday to a follow up BP check and appointment with my OB. It was at this point that he told me I had severe PE and HELLP and that he would recommend I not carry another pregnancy. So now I am recovering and researching HELLP and trying to make sense of it all. I learned that sometimes when women have babies by different fathers they can develop PE with one and not the other and the fact that the babies were not genetically mine could have greatly increased my risk factors. I am still worried about any lasting effects and feeling very blessed that I did not experience anything more serious than I did. I know it could have been much much worse. But I am worried that I may have to always be on BP meds and that I will never get back to "normal." I don't understand why my condition was never explained to my husband or I. Yet while I am sad I experienced this and I am sad I will be unable to carry another surrogate pregnancy, I feel very blessed that I was able to have my children and that the babies I had this this past pregnancy are healthy and did not experience any adverse effects from this experience. Thanks for listening!

Return to “HELLP Syndrome Survivors and Underlying Disorders”

Who is online

Users browsing this forum: No registered users and 3 guests