Emotionally Dealing with HELLP Over a Year Later

[bethaileen]

I'm here because I still occasionally have awful nightmares about losing a baby or the stress of being in this dark space with machine sounds, just miserable. I know I'm very fortunate because my baby boy was only born a month early and I managed to give birth to him induced without a C-section. But I don't have a lot of answers about HELLP or what happened to me specifically.

I was under care at a Canadian Women's Health facility, where they were just overbooked and only had one doctor running around. I wasn't ever really given answers because they were in the process of confirming if I even had HELLP until I had been there awhile and my son was born. (Of course, what was really going on was they kept saying, "You could have HELLP, so here's what we're doing for precaution.") I don't know much other than that I ended up having a "severe" case. I was put on magnesium sulfate and had induced labor. It's all a blur of sleeplessness because of nurses constantly waking us up, rapidly beeping heart rate machines (no one told me my hand had to be below my heart to make it stop beeping, so it kept seeming like something was seriously wrong every time I shifted), and frequent tests. I was kept there for two weeks (no internet, ahh!) and only managed to be able to breastfeed because my midwives intercepted some time after he was born to help me get that underway, with a lot of persistence. I still don't think I ever had a healthy full supply.

I was thankful for the nurses on the downstairs floor who really helped me take care of Malcolm the first few days, but then we were moved upstairs where they aren't used to anyone having anything special going on with them, and just plain treated rudely or mishandled constantly with persistent interruptions, urine tests, blood tests on both myself and Mal, and even ridiculous slip-ups by training nurses ("Oh no, I didn't know I needed to send your sample downstairs. Could you please give me another one within a half an hour before my shift ends? So sorry!") Mal was jaundiced and had the whole glasses and light setup, which was a bit traumatizing on its own.

He is now 16 months old and very healthy and active, but I still have flashbacks and moments of anxiety, either over the past or the idea that it might happen again. I want to move on, but it seems so rooted in my subconscious, and it's clouded with a lack of answers. I never saw my charts/numbers. I don't know what any of the short-cut acronyms you guys are using on the forum even mean. I can't remember what my medication was. I just know that my platelet count dropped to the point where I should have had a seizure after birth. I know I felt trapped, insane, sleepless, and it carried into my home with bad dreams and waking up in the night thinking I was hearing Mal crying when he was right beside me.

I was planning a serene home birth. You know, candles, gentle music, hanging out in a warm bath. It didn't end up that way and I don't know how to let go. I was 24 when he was born, perfectly healthy and fit, nothing was wrong until something was suddenly severely wrong and I didn't know what it was.

Is anyone else still coping with HELLP this long after the experience?

If anyone could explain or link me to a post that has a rundown of all the terms you use, that would be super appreciated! Thank you.

[amandaoasis]

Hello Beth, and welcome to the forums. First off, here is a helpful link with all of the abbreviations:


http://www.preeclampsia.org/forum/viewtopic.php?t=2675

I am so happy to see that someone with a similar situation to mine has found this important resource. Connecting with this forum and the experienced ladies on it is what has helped me in healing from the HELLP nightmare.

A bit of background: my son was born at 31 weeks due to HELLP with a helicopter ride for me and 32 days in the NICU for him. It was traumatic to say the least so I know where you are coming from. For the past almost year I have been struggling with anxiety, racing thoughts, and an inability to properly deal with what happened to me. I would think about it and it would consume me for a length of time. Then the anxiety would spread to other issues in my life. I tried to deal with it on my own without much luck.

I found this forum in January and it was so incredibly helpful. It helped my get educated which I feel is the most important step in dealing. I now know what happened and why. I don't know if it will happen again, but I have seen a great specialist and have some idea of how a future pregnancy will be managed.

The other think I did was see a counselor. It was the first time I had ever even considered such an intervention (I'm 26). It only took a couple of talk sessions and one session of EMDR and I feel much more in control. My anxiety has lessened considerably. When I think about the HELLP experience now it seems that it happened 10 years ago. I think about it and then I move on to something else. The feeling of being paralyzed is gone.

I don't know if EMDR would help you and I am certainly not a counselor or doc, but I'm very happy that I gave it a try. It feels as if I have finally processed my experience. I think you are starting in the right place to eventually let this issue not consume all of your being.

Keep asking questions and best of luck to you! Oh, and congrats on your healthy son.

[jgrumet]

I think every woman that has had this needs to find a way to deal with this- because it won't go away on it's own.

The thing that helped me the most was my faith in God to help deal with my anxiety and also to try to help other people. Volunteer work is VERY therapeutic. You can sit on these sites for years trying to find answers and it still doesn't make you feel any better. I needed to know there was a great life that I still needed to live and I was letting my fears get in the way. I still have occasional anxiety, but nothing like it was for probably a good year.

I know another woman who had HELLP and she said she needed 6 months of intense therapy before she would stop having night terrors and cutting herself (she had PTSD severely)...So, everyone is different, but definitely not alone!

I almost think it would be weird if you didn't get a little traumatized from the event- it was a really scary thing, but it is over! We made it!

[bethaileen]

Thanks so much!

My story goes that I had been extremely sick for about a month (I just thought it was a normal feeling of pregnancy) before my blood pressure was checked by my midwives on a regular meeting and I was sent off to run blood tests. I got blood tests at a different facility and urine tests at the Women's Health hospital. My urine was really poor and they wanted to keep me but the blood tests were elsewhere and I was let go for one more night. They got the results in during the morning and asked me to come in immediately. It was a lot of room shifting, checking, tests, and sitting around not knowing what was going on, to finally be told some time in the evening that I needed to stay for the night.

During the night, I had a horrible sharp pain in my lower body and was sent downstairs to start inducing labor while being given more tests. I remember throwing up from the magnesium, bands around my belly, beeping, the IV setup, and a whole day and a half of being trapped in this tiny tiny tiny room. My doctor was telling me if I didn't give birth at 3:00 AM, they'd give me a C-section, but we pulled through and Malcolm was born on June 8, 2008 at 3:06 AM at 31-32 weeks. The doctor arrived late and Mal was already there, ha ha! He was born only 6lbs 6oz but 2 feet long.

We had a total trauma of Mal being suffocated and turning purple when I was on my side breastfeeding just moments after birth. I was so out of it and other people were handling things and moving him around that I don't know how it happened. I just try to tell myself it wasn't my fault. He was rushed out of the room, and so did everyone else, and I was alone for this horrible time until my midwife came in and told me everything was okay and they were just checking his vitals.

After that it was all a mesh of bad sleepless experiences mixed in with some very supportive care from nurses downstairs who subverted the system and kept sneaking us donor milk, so thankfully Mal was very well taken care of. We were both jaundiced, I had no milk supply because of the magnesium, and we just brought that home with us.


I had a reflective moment yesterday and realized what kicked the anxiety in. I did something to my wrist lifting something or pressing against something the wrong way and had a minor pain but some major bruising. I think it subconsciously put me back in that time when I had an IV and ART line coming out of me. There was a period of about three days where they kept sticking needles in me but eventually they couldn't find anymore "good" spots so they put an ART line in instead. That ended up being better; it was really the IV that got in the way, not only being post-pregnant but also having to haul the pole down a tight angle of a tiny room to get to the bathroom.

Eventually near the end of my stay, the IV was supposed to be taken out, but it was just disconnected. It was supposed to be flushed regularly but ended up miscommunicated to nurses that the whole thing had been removed and didn't get addressed until I finally asked a totally different nurse if the discoloration, bruising, and pain on my wrist was normal. She looked at me in shock, dashed off, and came back and informed me she was going to remove it without doctor consent because it had to come out. I later tried to explain what happened to my doctor and she completely ignored me and replied, "Oh yes, I told them to remove that already, it was all taken care of," and I was treated like I didn't know what I was talking about as if I was just out of it and couldn't remember days.


I still don't know entirely the extent of what happened to me, but after reading these forums, things are coming back to me. Terms, ratings. I know I had a severe case, that my platelets were going down steadily and dropped to a deadly count right after birth, that my urine was very very bad, and that this followed after extreme pain that I had been experiencing for a month. Plus there were other things, pardon the grossness, like my feces had been yellow for a month before they caught my blood pressure. My regular check-in with my midwives had been delayed because they were handling pregnancies so it was caught late. I go through times where I just feel like such an idiot for not going in earlier, but I have to remember that we both made it, and we're doing well now.

Wow, I just typed a lot, but I've never done that before, and I do feel so much better!

[caryn]

Beth, the links in my .sig are a good place to start, too.

I'm glad you've found us -- talking to other women who get it does make you feel a lot better!

[bethaileen]

All of the resources here have really helped so far. I'm thinking about ordering a report from the hospital. Did you find that helpful? I think I may be a numbers person and need to see it in writing to grasp what happened to connect the dots of my emotional/physical experience.

[tree]

Hi Beth - I recently received my report, and it was helpful to know just how bad things were. I am also a "numbers" person, and I needed to know. I was pretty upset the first time I read through it, but I really did feel better after a few careful readings with Dr. Google. The surgical note, intake note, doctor's report, and lab reports were the most useful. The 30+ page medication log that I paid for was not. Try to find out how to only get what you need if you will have to pay by the page.

[amandaoasis]

I also felt more educated and in control after I read through my records. I definitely think it is worth having them.

[jfindley]

Hi Beth. I had HELLP and delivered at 26 weeks. My son is thriving and healthy, thank God, but I still suffer a great deal from the experience. It has almost been a year, and I am still putting the pieces together. I finally got my medical records a few months ago and had questions about my lab work, so I asked for a referral to a hematologist. I was encouraged by the women on this site to pursue this avenue, even though my docs were not being proactive in testing me for underlying conditions. I am so glad I did, b/c there were some findings about a possible immune disorder that I can now followup on. I still find myself going back to those horrifying weeks in the NICU when we didn't know if Isaac would survive. I literally flashback to episodes where his entire body turned blue and they had to bag him to get him back and more horrible images of babies in the beds next to him dying. It was truly an awful, pro-longed (2.5months) experience that I have not been able to put behind me yet either. This site has helped more than I can say. I have seen a therapist, but it does not compare to sharing with others that have been in the exact same situation. I understand entirely what you are going through. I would definitely recommend pursuing as much info as you can about your case. I am still discovering things that are filling in blanks for me and giving me confidence to think about another pregnancy. Keep us posted on your progress and please feel free to contact me if you have questions about your records, I feel like an expert now at decoding some of the acronyms and numbers.

[atvlady]

I had HELLP at 20 weeks and delivered our daughter. She lived an hour and 20 minutes and passed to prematurity.
I found this site and it has becomce a positive place to come. I am also volunteering for the foundation distirbuting brochures and have even met women in my area who went through these syndromes as well. I was thrust into a ambulance and sent to one of the most highly skilled NICU's in this state and also a ICU that was skilled in seriously ill pregnant women. This hospital is an hour from my house. They thrust me in to the ambulance, took off 120 mph up the interstate, lightds flashing, sirens blaring, BP machine going off, the guy in the back with me was in tears cause everything was going haywire. He finally took my hand and said he was going to pray for me and the baby. My liver was killing me too and I could not stay still. They rush me into the hospital. We didn't stop until we got up to the pregnant woman ICU. When I got there they hooked me up to what seemed like 10 machines and brought more in. I was in so much pain I was begging for someone to take my liver out or put me out of my misery. My right rib cage was KILLING me. That was the only symptom I had! They worked on my vitals all night that night and the next morning I went into labor. They had done a ultrasound late that night when I arrived and they discovered that the placenta was fried, there was no hope for our little girl. When I went into labor the dr came in to talk to me. I didn't realize how bad I was until they came in and started getting me to sign forms for blood transfusions, see if I had a will, then I signed a paper to let my husband make my deicions cause I was NOT mentally able to make them.
Four months later I still am trying to recover both mentally and physically. Physically my liver is out of whack and I am just too tired to do anything. Mentally it is a hard road. There are a few things that keeps me thinking forward. We are TTC in November and I am alive:) I was gave one hour to live at the end but then I delivered Darren and my body started to stabilize then by the 3rd day my blood counts started going back to normal. Another thing that has gave me comfort is I am writing a book to help comfort other women who has wore the same shoes. It is not a easy road and this is a trauma we will always have to live with. Especially for those of us who has lost a baby to these syndromes. I too am seeing a counselor. She has helped me a lot.
Take care.