Emotionally Dealing with HELLP Over a Year Later

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Re: Emotionally Dealing with HELLP Over a Year Later

Post by audrey s. » Sun Nov 07, 2010 02:11 am

It took a long time for me, and I'm a healthcare professional who knew, intellectually, what had gone on. I still to this day mourn that loss of the "normal" delivery, and pay a physical price (lymphedema of my legs and other things) thanks to our experience fifteen-plus years ago.

I do think that the magnesium really exacerbates this feeling of disorientation, making everything so much MORE nightmarish than it might otherwise be. I was on mag for five-six days, and by the end, was talking to people who weren't there, seeing things on the walls (giant cockroaches, YUCK!), etc. It does weird stuff to your brain, and the cerebral edema doesn't help either.

My daughter's fourteenth birthday was the first birthday where I wasn't remembering everything that had gone on and finding those feelings all welling up again. Interesting thing is that she is obsessed with her birthday -- in a good, fun way! She notices when she sees those numbers come up on the clock, and absolutely LOVES the whole birthday thing. So I have tried very very hard not to pass on my trauma and tears to her around the circumstances of her birth. She is aware of it; she spent two months in NICU, had two surgeries for NEC (even though she was 37 weeks, she did not get enough oxygen during delivery and was born depressed, blue, and with scarily low oxygen levels which didn't improve for some time. However, she is an honor student and we were very, very lucky, all told. Just living everyday life and seeing your child grow and develop in spite of that horrendous beginning helps a lot, I think. And also knowing that a lot of the scary things have simpler explanations -- like the monitor leads going off every few minutes, probably really just being caused by a loose electrode rather than anything in your heart since it happened when you moved -- helps a lot. The magnesium does very weird stuff to your brain, and I know that a lot of the frightening things that happened to us had their nightmarish aspects really magnified by the drug. Yes, it saved my life, but sure left me with some VERY weird memories!

I know that cognitive therapy has worked very well for a number of people who are suffering from PTSD for a variety of reasons, so it might well be worth looking into it for you. Also, it's easy for me to say that "it takes time" because I'm looking at it from the perspective of a parent of a high-schooler and we've had that time.

I hope you're able to find healing in whatever way works for you, and sooner than I did.

Re: Emotionally Dealing with HELLP Over a Year Later

Post by cmiller1965 » Sat Nov 06, 2010 03:11 am

I'm nearly 17 months pp. Had severe eclampsia then HELLP. I have a healthy daughter who I'm thankful for, but have done alot of grieving having had two normal pregnancy and deliveries prior, so giving birth at 30 weeks 3 days to a 2 lb 7.7 oz baby with a 3 month hospital stay was pretty traumatic. Going home to be a 24/7 caregiver while still needing to recover myself has left me sleep-deprived, and in survival mode. I still have days that I cry about the experience and have frustrations with the physical residual effects I'm still having from the HELLP Syndrome. Be kind to yourself, get lots of rest, and ask your family and friends to educate themselves on what you went through, so they can show you the compassion you need, and know how to help.

Re : Emotionally Dealing with HELLP Over a Year Later

Post by stjamesb » Mon Oct 12, 2009 10:30 pm

I am glad to hear that your son is doing well and I am sorry that you had to go through a terrible experience in what supposed to be a wonderful time for a woman. I too had severe HELLP (6 years ago) and was in intensive care for 3 weeks. My liver was failing, they were talking about liver transplant plus other organs started to shutdown. I do know what you meant about the colour of bm and #1. My stay at a teaching hospital was good, the doctors and nurses were competent and they really cared. Even so, it took a while for me to heal emotionally. We followed up with a specialist who is one of the best in my area and he did extensive tests. We wanted to know if there are underlying causes and whether we should have a second child. I stayed focus on the fact that my son is healthy and I am back to normal. We even tried for a second and that pregnancy was HELLP-free. During the few years that followed my illness, I talked about HELLP to anyone who would listened, I posted notes about it in various boards. For me, talking about is therapy.

Re : Emotionally Dealing with HELLP Over a Year Later

Post by bethaileen » Mon Oct 05, 2009 00:43 am

Thank you so much for sharing your stories! It makes me feel thankful things went as they did, and it also lets me grapple with some things that happened.

I know -exactly- the pain everyone is talking about. When I was hospitalized, I had that pain frequently, and even right after birth. I remember completely flipping out because I hadn't been allowed any food or beverages and exclaiming that I was in excruciating pain due to hunger (I just didn't know any better). Instead of asking me where the pain was, I remember one of the nurses saying, 'well, if the worst pain she's having is hunger, she's fine,' and ignoring me, while another nurse snuck me a popsicle and alerted the doctor. I felt like I was dying, and I felt like there was no one there to help me, because the doctor was too busy and they didn't take me seriously.

And oh... to lose a baby or to watch them go through the experience of trying to survive... I feel for you both (and everyone on this forum) so much. Your strength to move on is guiding me.

Re : Emotionally Dealing with HELLP Over a Year Later

Post by atvlady » Sun Oct 04, 2009 01:58 pm

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.

Re : Emotionally Dealing with HELLP Over a Year Later

Post by jfindley » Sun Oct 04, 2009 01:31 pm

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.

Re : Emotionally Dealing with HELLP Over a Year Later

Post by amandaoasis » Sun Oct 04, 2009 12:16 am

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

Re : Emotionally Dealing with HELLP Over a Year Later

Post by tree » Sun Oct 04, 2009 12:03 am

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.

Re : Emotionally Dealing with HELLP Over a Year Later

Post by bethaileen » Sun Oct 04, 2009 00:36 am

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.

Re : Emotionally Dealing with HELLP Over a Year Later

Post by caryn » Sat Oct 03, 2009 08:58 pm

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!