My story

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
preemomof2
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Re : My story

Postby preemomof2 » Mon Jul 12, 2010 04:57 pm

Hi Jen (przygoda), I did ask for my hospital records and read through them, and when i came through the description of my baby's birth all i could do was cry. I wish she could forgive me for not being the first one to wrap her around my arms! i think i have healed spiritualy after more than one year.

I can still remember when i first walked into the nicu, the nurses were so amazed at my recovery, and one of them was telling the others who i was, apparently i was some news! When i read n=my hospital report there's no mention of HELLP, PRE ECLAMPSIA or even PLACENTA ABRUPTION. They told me i had that at the doctor's.

preemomof2
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Re : My story

Postby preemomof2 » Mon Jul 12, 2010 04:48 pm

Hi Jenmatt1, Congrats on your pregnancy! I hadn't posted in a while cause like many of us do, i was going through the emotional healing of hellp. My angel is know almost 18 months and she's doing well. I will say a prayer for you and your baby. i really wish you the best through this pregnancy.

jenprzygoda
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Re : My story

Postby jenprzygoda » Tue Jul 06, 2010 10:34 am

Gabriela,
I am so sorry to hear you had such and awful experience. While I was lucky that my doctors and midwives didn't ignore my symptoms, they weren't sure what to make of them either. I had very bad swelling for the month before my son was born and they were running tests all the time, it is just that HELLP came on all of a sudden. What struck me about your post was the comment about not seeing your baby's birth. That is still one of the biggest "regrets" that I have. I put regrets in quotes because I know it was not my choice and that I had to have general anesthesia due to my complications, but I am so jealous of all those moms and dads out there who are able to witness the birth of their child. When others talk about what it was like when they first saw their baby, all I can do is think of how it took so long before I was well enough to see him - I am guessing it is a similar feeling you have. So for me, this is what has helped - 1) I read my hospital report and my surgery report as it was a very straight forward account of what happened and 2) when people talk about the joys of birth or seeing their child for the first time, I say wow, you are lucky! I wasn't there for my son's birth! It really makes people think and helps me move the conversation in a different direction. I know this doesn't help with losing your confidence in your doctors, but I just wanted to let you know that you are not alone in how you feel. Take care of yourself!

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danielsmom
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Re : My story

Postby danielsmom » Mon Jul 05, 2010 11:30 pm

First of all, praise God your little one is fine! You had me nervous reading through that. :-) Daniela is a beautiful name, my little miracle's name is Daniel and I had thought of Daniela if he was going to be a girl.

Doctors sometimes have inflated egos. In a book, "The Silent Cries of the HELLP Syndrome Baby", the author wrote a similar story about her OB evading the HELLP diagnosis from the hospital's MFM. In her post-partum visit with the OB, she asked about the diagnosis and he said something like "they should leave obstetrics to obstetricians". Then on her discharge paperwork from that appointment, he wrote HELLP Syndrome as his official diagnosis. That always stuck with me.

My OB and other nurses also gave me the gastritis/heartburn opinion too. I've never had heartburn so I thought MAN! Heartburn is killer!

jenmatt1
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Re : My story

Postby jenmatt1 » Fri Jun 25, 2010 06:27 pm

Oh- and by the way- it seems to be a common thread amongst a lot of women to have had a UTI during pregnancy. The one & only time in my 34 years that I have had a UTI was supposedly while I was pregnant. Looking back, I think this was early sign of protein, not really a UTI. I know there are some other women on the forum who have had this as well/

jenmatt1
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Re : My story

Postby jenmatt1 » Fri Jun 25, 2010 06:25 pm

Reading these stories I feel so lucky that the moment I called my doctor's office she had me come in right away and within 30 minutes from getting to her office I was being admitted to the hospital. I never had any right side pain- I just didn't feel good, like a cold or something. So by the time I got the hospital I had class I hellp too. I know how differently my situation could have turned out if she had ignored what I was telling her. Even though me & my daughter had a rough birth, it could have been much worse if she didn't listen to me.

I struggled with the idea of more children, especially after I had 2 miscarriages in a row. But I am now 11 1/2 weeks pregnant now. The thing that changed is that I monitor everything now. I am not afraid to ask questions or call them even when I am just nervous and I have talked with my doctor about a plan for this pregnancy and how often I would be monitored, etc. Believe me, I still fear it happening again but I feel much more in control of a plan of what to do.

cjd
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Re : My story

Postby cjd » Fri Jun 25, 2010 02:42 pm

Your posts give me chills. That the OBs wouldn't talk to you about the situation stuns me. My OB's nurse admitted that they "got the book out" the next morning to see if they could have done something differently or should have known about how I was doing prior to the full-blown HELLP. My doc had been following me closely and doing regularly testing. Two events shouldn't have occurred, however: 1) I went to L&D with false labor four days before I delivered and the nurse released me with elevated BP. We didn't know at the time that elevated BP could indicate anything out of the ordinary (I was having contractions and felt justified in having a raised BP...umm, can you say first-timer??). And 2) 1) When I called L&D at 2 a.m. to tell them I was having horrific epigastric pain, they should have told me to come in (instead of instructing me to take a Tums and go back to bed).

So my doc actually never knew about these events. I never had chest pain in the day time again until the day I delivered. I called to tell my doc I wasn't doing so well...and I was right.
It just happened *that* fast.

preemomof2
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Re : My story

Postby preemomof2 » Fri Oct 23, 2009 11:22 am

Don't know, we initially wanted to have 3 children,but at this point we'll just give it sometime.

jfindley
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Re : My story

Postby jfindley » Fri Oct 23, 2009 01:17 am

We are thinking about having another baby, but I am so scared. On delivery day, on the MRI they also found a rare adrenal gland tumor that causes deadly high blood pressure. All the docs say it was almost certainly the cause of my HELLP and I had surgery to remove it. I felt good about this conclusion for awhile, but the more I learned about some of the more common underlying conditions of HELLP, the more I wanted to be tested for them all. I finally asked to be seen by a hematologist and low and behold, we found another underlying condition, a possible autoimmune disorder. The deeper I dig, the more we discover. We also found a thyroid tumor that will be removed in a couple of weeks. I will have had three surgeries in one year and my MFM has suggested that I take some healing time before we try again for another baby. I totally agree. The whole year has been pretty traumatic. I do feel a lot more confident now that my docs are all aware of my history and underlying things. If we did conceive again, I would feel a lot safer this time. Do you think you will try again?

preemomof2
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Re : My story

Postby preemomof2 » Thu Oct 22, 2009 11:44 pm

Thank you, I also want to be as informed as I can because if we have the opportunity to have another little one i want to be in control. It's so difficult to go on with fear that if I become pregnant something might happen to my baby or to me and that i will not be able to be with my daughter. i'm glad to hear your baby boy is growing. Are you thinking about having another baby?


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