HELLP 7 years ago; fear of second pregnancy and now in 40s

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

HELLP 7 years ago; fear of second pregnancy and now in 40s

Postby HELLPSurvivorsUnite » 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?

Thanks!

Andi
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Re: HELLP 7 years ago; fear of second pregnancy and now in 4

Postby CptSpacely » Tue Jan 28, 2014 12:16 am

I'm very sorry to hear that you had such a rough pregnancy and that your health care providers largely failed you, and I'm even more sorry to hear that you've been beating yourself up over delaying having a second child. :cry: I agree with your husband that you should be more gentle with yourself. I was not officially diagnosed with HELLP syndrome, but I did have elevated liver enzymes and was probably heading down that path by the time my PE was caught (by a doctor who was NOT my regular OB/GYN...but that's a story for another time :roll: ) and my son delivered. I am currently planning on TTC a second child, but I find myself changing my mind (or at least doubting my decision) at least a dozen times a day. PE and HELLP are very serious conditions and it's scary stuff. I know I'll be monitored a lot more closely, and I know what I should be looking out for this time, but my condition deteriorated so quickly last time, I can't help but fear for my life and the life of my child. We don't have a crystal ball, so we can't predict whether we'll get the disease less severely, more severely, later, earlier, or not at all. In the end, all you can do is make a leap of faith. If you can't bring yourself to do that, it's absolutely understandable. No one, least of all yourself, can blame you for not risking your health and your life a second time.

On another note, you mentioned the risk associated with donor eggs, but I'm concerned that you're not aware that even traditional IVF is also correlated with an increased risk of PE. Here's a recent thread that I participated in on that very subject: http://www.preeclampsia.org/forum/viewtopic.php?f=12&t=45918&sid=0b76f8a9b1ab34c3ab7b9a56bb9226be

I hope you find peace with your decision. I'm confident that whatever it is, it will be the right decision for you and your family.
DS: Born via C-section on 7/4/12 at 33w5d after sudden onset of severe PE. Now a happy, healthy toddler!
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Re: HELLP 7 years ago; fear of second pregnancy and now in 4

Postby CptSpacely » Tue Jan 28, 2014 01:27 pm

I just discovered an old thread with experiences of ladies who had gone through HELLP in a previous pregnancy and went on to have more babies later in life (late thirties/early forties). I thought you might find it interesting: http://www.preeclampsia.org/forum/viewtopic.php?f=17&t=45319&sid=dc90e7e924fc30e868192e601c74c0f8
DS: Born via C-section on 7/4/12 at 33w5d after sudden onset of severe PE. Now a happy, healthy toddler!
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Re: HELLP 7 years ago; fear of second pregnancy and now in 4

Postby Mari2013 » Wed Jan 29, 2014 06:51 pm

I am sorry you had HELLP and your pregnancy was mismanaged. I agree any pregnancy is a leap of faith and you have to educate yourself on all the risks, including those associated with donor eggs and do what's best for your family.

I am in that evaluating stage myself, after developing HELLP and losing a second baby at 15 weeks likely due to placental issue. I go back and forth all the time, from being afraid of dying, to having a stroke or losing another baby. My OB was not encouraging.

Today, and it could change, I feel like I do not want to do IVF again as I did with my first two pregnancies. My intuition and some literature make me feel like the IVF contributed to the other pre-e risk factors I already have.

It's so personal and emotional and I relate to all those feelings--anger, fear, desire for another child. I wish you peace and the best in whatever you decide to do.
Mom to one amazing toddler girl, delivered at 28 weeks due to severe HELLP.
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