Emotionally Dealing with HELLP Over a Year Later

[bethaileen]

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.

[stjamesb]

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.

[cmiller1965]

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.

[audrey s.]

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.