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Pregnancy outcomes after severe, early-onset pre-e?

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Pregnancy outcomes after severe, early-onset pre-e?

Postby SarahKL » Wed Mar 19, 2014 05:08 pm

by SarahKL (1 Posts), Wed Mar 19, 2014 05:08 pm

Hello all!
This is my first post, though I've read and reread much of the information on the site in the last few months. I lost my baby, Henry, 9 weeks ago, and I just wanted to share my story and also let you all know how helpful it is to read your stories, as well.
My blood pressure had been creeping up throughout my first and second trimesters, and I was put on bp meds at 20 weeks. Around 22 weeks I was given instructions to complete a 24-hour urine test, just as a baseline, so that if I DID end up developing other any pre-e symptoms later in pregnancy, we'd have something to compare it to. (I hadn't had any protein in my urine at any of my office visits.)
The results came back from my 24 hour test at 1600 mg., and I was sent straight to the hospital. They were hoping that there had been a lab error (as I hadn't had ANY protein in my most recent office visit sample.) When the 24-hour test was redone at the hospital, it had already increased to 3600 mg., and my blood pressure was 180/115. I was stabilized and remained on bed rest at the hospital for another two weeks or so, and my liver and kidney functions stayed fairly stable during this time. My platelets were dropping slowly, but were high enough that I could remain pregnant.
Once I hit the 24 week mark, the baby started to be more closely monitored, and it was clear that he was beginning to struggle. The blood flow through the umbilical cord was beginning to become compromised and his heart rate was starting to show some decelerations. At 24w3d, the doctors decided that he would have a better chance on the outside, and Henry was born via emergency c-section on the morning of January 15th. He lived for 22 minutes while the NICU team worked on him, but his lungs just hadn't developed enough. (I had been given the steroid shots about 5 days prior, but he was very small for his gestational age, 480 grams, and had only gained about 40 grams during my two weeks of bed rest in the hospital.) It was, and continues to be, the hardest thing I've ever experienced, but we have had wonderful support from the hospital staff, our families and friends, and a local support group for infant loss.
I have many questions for people who have been in a similar situation, but know that many of them have already been addressed in other posts so have been searching those out in the last few weeks. Mainly, I'm curious to know about people's experiences with subsequent pregnancies after severe, early-onset pre-e. My MFMs have said that, if after testing, no underlying conditions are found, I have about a 70% chance of recurrence, and that it may come just as early, or could come later. If you had a recurrence, did it come later? What was the outcome?
Also, I've noticed that many people seem to be prescribed lovenox or other blood-thinning injections in subsequent pregnancies. Are these only used if a blood-clotting disorder was detected, or are they ever used as a preventative measure?
Thanks to everyone who has shared their story here- it's so helpful to read about other people's experiences.
Sarah
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby MomTimesThree » Thu Mar 20, 2014 04:22 pm

by MomTimesThree (571 Posts), Thu Mar 20, 2014 04:22 pm

Sarah-

I'm so very sorry for the loss of your sweet Henry. You'll have a better picture of where you stand when all tests for underlying disorders come back. You won't be able to change that you'll be high risk going into your next pregnancy... however, what will be different is you, your team and your pregnancy. Everyone will be on the highest alert right from the start. It's a bittersweet gift our children who pass give to their younger siblings. And lots of moms, myself included, have traveled that road and will be glad to be here to lean if and when you need.

Best,
Lauren
2008-Our Baby Girl, PTL born too early at 30w6d, Fought so hard... Forever Loved & Missed
2010- Lil' Bro, Pre-E at 29 weeks... Induced at 36w6d, Born 37w
2012- Lil' Sis, Super-imposed pre-e at 25 weeks, PTL & GD at 35 weeks, Evicted 36w
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby BFRENCH » Fri Mar 28, 2014 03:58 pm

by BFRENCH (5 Posts), Fri Mar 28, 2014 03:58 pm

Lauren- beautifully stated.

I got Severe Pre-e and HELLP at 22 weeks with my first and lost him. One year later I got pre-e again with my son Max. He was born at 29 weeks weighing 2lbs 10oz. He is 5 months old and now weighs just over 11 lbs. Lauren is right--everyone will have a better sense of what is going on. My drs kept a real close eye on me the 2nd time around. I even knew what to look for, and little ways I could help.

Your next pregnancy will be very scary, I'm not going to lie. Try not to though. Stress wont help the situation. My second time, I took a baby asprin every day. I also went on strict bed rest as soon as the signs started showing at 23 weeks. This seemed to really slow things down. My advice- Get a good dr., rest rest rest, stay calm, & drink lots of water. You have a beautiful angel watching over you. Have faith.

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You can read my story, and share yours if you would like.

Brittney
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby angieb » Fri Mar 28, 2014 10:48 pm

by angieb (1192 Posts), Fri Mar 28, 2014 10:48 pm

I had HELLP at 23+2 with our daughter. Tested negative for blood clotting disorders but my MFM felt it was worth the risk to put me on blood thinners. (A different mfm said no way to that idea...some will and some won't.)
DS1 was born at 36 wks and DS2 37 wks, no HELLP or official pre-e either time, I was on lovenox and low dose aspirin and monitored very closely. It was incredibly stressful but so so worth it.
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby Nickipetersen@hotmail.com » Sat Jun 21, 2014 01:49 am

by Nickipetersen@hotmail.com (7 Posts), Sat Jun 21, 2014 01:49 am

First of all, I am so sorry for your loss. Absolutely heartbreaking. I developed pre-e and delivered at 28 weeks with my first pregnancy and had a totally normal second pregnancy. The only changes I made during my second pregnancy were that I did take low dose asprin and was quicker to take a sleep aid (because I had really bad insomnia during my first pregnancy). I was monitored very closely as well. I tested negative for any clotting disorders and got totally opposite opinions on asprin from docs at the same practice. It seems hard to get any straight answers when it comes to pre-e- just guesses. I recently read somewhere that a diet high in sulfur helps to keep pre-e at bay, but who knows (it's healthy foods anyways, so it couldn't hurt).

-Nicki
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby Maplecat6 » Wed Jun 25, 2014 03:34 pm

by Maplecat6 (25 Posts), Wed Jun 25, 2014 03:34 pm

I'm sorry for the loss of your sweet Henry. I had eclampsia at 27 weeks with my third pregnancy and lost my daughter. All of my testing came back normal. My husband and I decided to try again. The subsequent pregnancy was incredibly difficult emotionally, but physically was fine. I had a caesarian at 38 weeks and never had any signs of pre-eclampsia.
Amy, mom to almost 5
Quinn, 4/28/06, no complications
Lou, 5/8/09, no complications
Rosie, 3/13/11-3/29/11, eclampsia at 27 weeks and then died from NEC
Sara, 5/3/12, no complications other than an obscene amount of monitoring
Baby #5 due in 2/15
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby valdawg20 » Fri Nov 14, 2014 06:41 pm

by valdawg20 (7 Posts), Fri Nov 14, 2014 06:41 pm

In my first pregnancy, I was diagnosed with severe pre-e at 28 weeks. I'm pretty sure I had severe pre-e before then due to upper abdominal pain and severe acid reflux. My daughter was born weighning 1 ibs 4 oz. She is thriving, just entered kindergarten, and is doing very well. No developmental or physical issues. For my second pregnancy I went to the same OB/GYN who knew my history. He did not refer or consult with a MFM duirng our intiial appointment. I even asked if there was anything I should do differently, and he said no. Long story short, about 5 1/2 months into the pregnancy I had upper back pain. After getting another high blood pressure reading and protein in my urine I was sent to L&D. Since my pre-e was so severe I had to terminate the pregnancy at 24 weeks. My baby girl did not survive. I remember when I entered L&D I was told that my OB/GYN could of did LDA and did APS testing. I was livid that my OB/GYN never referred me to a MFM or even did a consult. I think as long as you have a MFM doctor going into the process that can offer you every possible opportunity to lengthen the pregnancy you will be at a good start. Good luck!
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby KetchupSpud » Mon Nov 17, 2014 08:37 pm

by KetchupSpud (15 Posts), Mon Nov 17, 2014 08:37 pm

I lost my twin boys this summer due to severe pre-e that was turning into HELLP. I had a c-section at 23w5d. Logan, 1 lb, survived for 3 days and Bryce, 1lb 4oz, for 3 weeks. It's horrible to go through and I'm so sorry that you know that all too well.

We aren't cleared to try again for another 6 months, but we just recently decided that we're going to. I was dead set against it in the beginning because I refused to do the same thing again and hope for a different outcome. (After all, the definition of insanity is doing the same thing and expecting a different outcome. Obviously it's not as simple as that, but you get the idea.) The loss is enough to bear, but I don't know how I'd get through it if I also felt guilty.

For a little background, I also didn't spill protein until I called my doc and asked to get checked again. I'd been in 2 weeks prior and had no trace. My bp, though, had been elevated, but not enough to trip any warning bells. (I usually have very low bp, but in office it's usually right around 120/80 and at ~16w went up to 138/89 and stayed there for 6 weeks.) I started swelling pretty badly and realized that I had gained 14lbs in 12 days. I went to the hospital that day with a bp of ~160/95 and 8g of protein (pre-e is 0.3g). Lasted 5 days before I had my c-section. Since I was having twins, I was already seeing both my OB and an MFM, so when I got put into the hospital my MFM took over all of my care.

When I saw him for my 6wk pp check-up, he said, "See you next pregnancy!" He could tell by the look on my face that I was not ok with that kind of response. He said that the research he "liked" said I had a 50% chance of recurrence with a 15% chance of it happening before 28w. That felt like terrible odds to me, but he said, "So the odds are in your favor!" Well, the odds of me having twins were much lower than 15%, and the odds of me getting severe, early pre-e were much lower than 15%, so 15% felt really high! He said he had someone else who lost a child early and she had diabetes and went on to have one a 33w and one at 26w, so that was a success. I didn't feel like having a baby at 26w would be a success, even if everything turned out ok in the end. It certainly wasn't what I was shooting for. He finished it with, "Some people think aspirin or calcium make a difference..." So basically, do the same thing again and just hope.

I went back to my OB who referred me to a different MFM and an RE (to talk about how we avoid twins in the future). The RE said we'd be fine, said we'd "for sure" make it to at least 30 or 32 weeks, and that babies born even at 26 weeks are fine and just stay in the NICU for a while before coming home. Again, not ok with his attitude. No one can say anything for sure, and the NICU is not a hotel!

The other MFM, though, is amazing. She talked about our odds of having a successful pregnancy (which she thinks are really good), which she said is a healthy take-home baby. (Unlike other doctors who were considering live birth a success.) She also believes in bp meds to help control it, which my other MFM didn't do last time, and wants to do aspirin and lovonox, even though my thrombophelia panel came back clean. She maintains that it doesn't test for everything and I show no other reasons for why it may have happened so, as she said, once someone's been through what we've been through, you want to try anything and everything to make it better. I agree - if I'm going to do this again, I want to know that I tried everything. That's the only way I can do it again and have any hope of not feeling super guilty if things go poorly.

So, after all of that, my point is, find a doctor that you agree with and feel comfortable with. My OB and new MFM are two of the nicest women I've ever met and they both get it - they realize there's a huge emotional piece to all of this and understand that they'll be treating that as much as my pregnancy. They've offered h/b or u/s checks if I'm worried, even if they're not scheduled, and recognize that this will be a very stressful pregnancy. My MFM says, "Every day is going to be a long day and every week is going to be a long week." They're going to be aggressive in treatments (be it bed rest, bp meds, etc) and have said they wouldn't blame us if we didn't try again, but that they wouldn't recommend it if they didn't think we could be successful. It's amazing how just the right support can change your outlook on a situation.

Good luck!
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Re: Pregnancy outcomes after severe, early-onset pre-e?

Postby killdill045 » Tue Nov 18, 2014 10:20 am

by killdill045 (1 Posts), Tue Nov 18, 2014 10:20 am

I tested negative for any clotting disorders and got totally opposite opinions on asprin from docs at the same practice. It seems hard to get any straight answers when it comes to pre-e- just guesses. I recently read somewhere that a diet high in sulfur helps to keep pre-e at bay, but who knows (it's healthy foods anyways, so it couldn't hurt). ?
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