I didn't know much about it at all. I had heard of PE/Toxemia, but never knew anyone who'd had it. I read that section in the "What to Expect" book, but it made it sound like you couldn't get it till late term, and it didn't sound like that serious of a condition. Certainly not a life and death disease. And aside from early induction/c-section, I had NO idea that it could really affect the baby negatively.

When my OB started to question me on side pain and swelling and said that my BP was high at 26 weeks, I was a little confused. And when she said she was going to have me do a 24 hour urine I was still a little baffled as to what that was going to do for us. The fact that I could actually have PE was still impossible to me, because it was so early. I thank GOD that she was on top of things and noticed symptoms that I wouldn't have.

Most of my learning of PE and HELLP has been done after the fact. I'll be informed the next time (if we decide to allow a next time) around for sure.

Becky

Mom to Tyler (9) and William (in Jesus' arms at 27 weeks. 01/18/04 - Severe placental abruption at 15 weeks followed by severe PE and HELLP at 27 weeks. Delivery by emergency c-section)

Some 8 years ago, my teacher friend had "toxemia" and swelled up like a balloon, but went full term and had a bouncing baby boy--beautiful, and recovered quickly.

That was the first time I had heard of it.

I was diagnosed with PIH at 32 weeks, PE by 34, and gave birth to Gracie at almost 37 weeks, only for her to not live through delivery due to an abruption caused by HELLP. Honestly, I thought once I got through that first trimester, I was home free and even said when diagnosed with PE at 34 weeks, "What's the worst that could happen? Grace will be born early and might need a little oxygen?" Now, I have eaten those words. It is so serious, and even though I had read the little blurbs in the pregnancy encyclopedias, I never had any idea the gravity of this debilitating syndrome.

A cousin by marriage, only two weeks behind me in her pregnancy, after hearing of Gracie's death, and my illness, recognized the symptoms in herself a week later and delivered a little boy two weeks later. If only people would find out about it BEFORE they developed it.

The whole lack of public education and disinterest is frustrating.

Tonja Schnelle
mommy to Grace Elizabeth,
born still 11-03-03 at 36wks and 5 days
due to PE & HELLP

Bel Air, MD
tschnelle@lccec.com

I had NO idea about the seriousness of it - With my son (4 years ago) my bp hadn't been high, but one day (after a busy day of running around) I was really swollen and went to the hopsital to get checked out. Turned out I stayed over in the hospital, he was 32 weeks, and got I the steriod shots. Went home and was just told to rest, but nothing was serious, didn't have bed rest. I ended up delivering him at 36 weeks (my water broke), he was fine. I had a miscarriage next and got pregnant again and was the same as you worrying to get through the first trimester. When that was over, I was a little concerned about my bp, but not too much (my dr. said only about 5% chance that I would get high bp again, he didn't even say preeclampsia or had any concern). At about 28 weeks my bp started getting high and at 30 weeks I was in the hospital again. Still thinking I would get the steriod shot as a precaution and then go home. I was on magnesium for 2 days before my labs came back with liver issues and they had to deliver her. I was still in shock when over those 2 days my dr. said he didn't think I would go home pregnant. Then I was hoping to stay in the hospital for a while, but they had to deliver her. I was then on magnesium for 3 more days and had more swelling before things for me got better. I really had no idea the extent of the complications for the baby or me.

I am scared to be pregnant again, fearing that it would come on earlier and more severe, since that happened before and lead to my daughter's death. If I do I will definately be much more proactive in my medical care, putting myself on bed rest with any sign of high bp, getting my own bp machine and those protein stick which someone mentioned are sold at drug stores. I don't trust statistics anymore, even though odds are against things, we have all lost to those odds.

Jill
mommy to:
Tyler - almost 4
Angel baby - January 2003 (11 weeks)
Faith Kristine - 1/5/04-1/30/04 (born at 30 weeks due to severe preeclampsia, passed due to NEC (intestinal premie complication) & Sepsis)

I was not really aware of PE. It was mentioned in passing in relation to the higher BP readings that I had. But, everything seemed OK to the extent that they put me on BP meds and I was told to check my BP daily. But no one ever said anything about losing Allison until the day that I was sent to the hospital. I went in for a normal routine appointment, or so I thought, and was planning for some friends to come into town. Then the doctor told me to go to the hospital and I was thinking and saying "What?!?!?!". Needless to say I got worked up even more and everyone just kept saying to calm down. How could I do that when no one told me anyone about PE till that day? Even then I really did not receive the information needed about PE until I was sent to a second hospital with a better NICU.

Unfortunately (since we lost Allison) and fortunately (since we will be prepared now) I know more about PE.

I can only hope that fewer women will need to know the pain of PE but instead will know about and combat PE and will be able to have better outcomes than many of us did.


Kim -- mother to Allison Jean, our beautiful angel who showed a spirit and strength that belied her small size

Hi Gloria,

I heard about preeclampsia a lot, but all I heard was that it happens at the end of the pregnancy. I had no clue it can happen so early or that my baby was in any danger.

(However, I think I was in denial, the 20w U/S report said that IUGR in the second trimester is usually associated with a poor outcome... hmmm that makes me wonder how come we did not figure it)


Ileana
IT Coordinator
Preeclampsia Foundation

Mother of Angel - stillborn on Feb 17, 2003 (24wGA, 410g)

Hi, Gloria. I also new NOTHING of pre-eclampsia. I was carefully reading "What to Expect When You're Expecting," but since I was just six-months, I was reading that chapter. The chapter on problems in pregnancy was way at the back, it had a short section on pre-e and I hadn't gotten to it yet. And you know, I never asked why I always had a BP check, protein, sugar, etc. at my appointments, and I was always happy when everything was normal (until six months). I mean I knew it was routine, but I never thought that there would be a connection between all of that and the subsequent death of my son. Today is a month since Isaiah died. It hurts but I haven't felt like crying. . .

Anika (32, severe pre-e)
Mommy's Angel Boy: Isaiah (1/20/04 - 2/17/04)
Born at 28 weeks 1 day gestation weighing 610 grams

Sadly, those of us who have lost a precious baby seem
to be growing in number... I am just curious to know if
you were aware of pre e before your pregnancy and if
it was something you knew that you could lose your baby due
to? Personally, I was very happy when I reached my second
trimester, because it was the time when I felt the most "safe"
(having passed the trimester in which most miscarriages take place) Little did I know of what was to come!! I had only heard of pre e in passing. A mom told me that they had to take her baby because she developed pre eclampsia. Her outcome was not affected in the minimum though, since she was already 9 months.

Gloria mom to Josiah 11/12/03- 12/4/03 @ 26wks pre e