by HELLPSurvivorsUnite (2 Posts), Mon Jan 27, 2014 01:34 pm
This is my first time posting here.
I had my beautiful DD 7 years ago, and had a severe case of HELLP that went undiagnosed and frankly, with symptoms beginning around 30 weeks dismissed by my rushed OBGyn. I began gaining huge amounts of weight in my third trimester, but the doctor's scale was old and broken and got stuck at a certain weight (they only realized this after my delivery). When I told her at each visit that my home scale registered a higher weight and that I was concerned, she dismissed my concerns and told me to see a nutritionist.
Next, I had floaters, epigastric pain, and general malaise -- all dismissed by this high risk ObGyn (seeing her due to ancicardiolipin antibodies and multiple allergies). That lasted from weeks 30-37. My bloodwork (which I requisitioned only later on) at 31-32 weeks revealed severe abnormalities -- clearly not noticed by her at the time.
Finally, at almost 37 1/2 weeks, I was itchy all over and called her office. The doctor's *secretary* dismissed me and said it was normal to be itchy at the end of pregnancy. I insisted and told her I was feeling very unwell. She told me to come in to see the doctor. ObGyn was again dismissive, but said she would do bloodwork, which she did.
That night, the ObGyn called me at 9 pm (never good) and this time, *she* was panicked, telling me to come in first thing in the morning for more testing. At the time, she thought it was cholestasis.
That's when the cascade of events took place -- the diagnosis changed from cholestasis to partial HELLP, and I was induced. I was in labour for THREE days, and finally had an emergency c-section. I had a small placental abruption but I was never told. It was in the post birth report that I requested.
The full picture emerged 5 days post delivery with a huge spike in blood pressure which was treated with nothing stronger than Lasix.
No steroids, no antihypertensives, no magnesium sulfate.
In the end, I ended up with liver enzymes that never quite went back to normal, but this was blamed on my weight gain during pregnancy.
I wanted at least two children, but DD was born when I was 38. I was terrified of having a repeat occurrence despite doctors reassuring me that it was unlikely to happen again and saying I should hurry if I wanted a second.
So I waited, and waited, and kept telling myself we'd try for a second after I'd lost weight. Instead, I gained more weight. (Now, I suspect it was because I was afraid of becoming pregnant again.)
So now, I'm 45. We've been trying to conceive for over a year now. Nothing.
I'm now confronting the HELLP issues with more anger. I feel my pregnancy was mismanaged, and that my doctors really had no idea what they were doing. This was confirmed when I described the above to the local high-risk pregnancy doctors I consulted last year. Both the senior doctor and the resident rolled their eyes. The senior doctor said, without demeaning the doctor and hospital I'd given birth in the first time (in another city) that such a HELLP case would have been handled very differently here.
I now blame myself for not having had my second baby early enough, to avoid advanced material age issues with egg quality.
My husband reminds me, however, that I was very sick with HELLP, that it took a few years to recover, and that anyone would be terrified to try again. He wants me to be gentler on myself.
As for the local fertility clinic, they advise going with donor egg, but they seem to know nothing of the current research about HELLP and Pre-E being more likely with donor egg (immune factors likely at play).
I'm at a point where I'm psychologically ready to have a second, but it would have to be with my own eggs, so we're considering IVF. If that doesn't work, we may adopt.
But I'm left with anger at the doctors, regret at my weight gain and waiting too long to try for a second, and a feeling that doctors just don't know enough about pre-e risk factors, let alone HELLP, to guide me. I feel as if I have to put all the information together on my own to make educated decisions, and I find that frustrating.
Can anyone reading this relate to this? Had a similar experience? I know that some have gone on to have subsequent HELLP-free pregnancies, but I would also love to hear from those who didn't, and who have made peace with this. If you have, how did you come to that place of acceptance?