Trying to hold ourselves together and find our new normal after loosing our precious twin babies at 20 weeks to HELLP Syndrome.
Baby Boy A and Baby Girl B, conceived after 20 months and IUI plus injectibles; born still on November 12, 2008.

A blog about pregnancy loss and infertility. And whatever comes next. A blog about hanging on together and holding each other up.

Friday, October 2, 2009

The Thing About Preeclampsia

Some time ago I received a phone call from a friend. She was late in the third trimester of her second pregnancy. She had been experiencing swelling and high blood pressure, and at her last appointment was told that she was spilling protein. Her doctor casually mentioned “preeclampsia.” So she called me.

I asked my friend for her lab numbers. And honestly, I was worried. Something was definitely going on. I know my story is the very rare worst case scenario, so I always consciously try to walk the fine line between trying to educate people about this little-known condition and, well, stepping out of place.

But my friend called for advice, so I tried to give it in a calm, non-alarmist manner.

I casually suggested that my friend buy a blood pressure cuff and that she push her doctor to do a 24 hour urine test. But it was the strangest thing. . . after calling me for advice – she kind of brushed me off! Denial, no doubt. But the most troubling part was that it seemed as if her doctor was being rather lackadaisical about the situation, too. But whatever. “Well, trust your doctor, I suppose. I’m sure he knows what’s best. . .”

After that, I called my friend several times to check up on her.

So, how was your blood pressure today?,” I asked.

“Oh, a little high, but they did another ultrasound and the baby looks great!”

“Yes, but what about protein? Are you still spilling protein?”

“Yeah, I think that’s gone up a little, too. But the baby still has plenty of amniotic fluid, so that’s good!”

“Yes, but. . .

“And he’s still measuring right on track!”

“Yes, but. . .”

She kept insisting. . .

And I just wanted to scream: IT DOESN’T MATTER!!!

Let me tell you about our babies. They were beautiful. And perfect. Measured right on track. Perfect levels of amniotic fluid. Ten fingers and ten toes.

But it wasn’t enough.

People always worry and talk about the baby’s health. But what about the mother?

See, that’s the thing about preeclampsia/ HELLP Syndrome. (And, I suspect, the thing about preterm labor and placental abruptions and incompetent cervixes, and a whole host of other conditions about which I do not know enough to address.) It’s not a condition of the baby. Preeclampsia certainly affects the baby; it can cause IUGR or low amniotic fluid or, obviously, prematurity and death. But it’s not a condition of the baby.

It’s a condition of the mother.

Here in the south we have a saying: If mama ain’t happy, ain’t nobody happy. (I suspect that there is a comparable northern saying that simply involves better grammar.) But what about – if mama ain’t healthy, ain’t nobody healthy?

And I’m not talking “not healthy” as in the mother drinks a gallon of Jack and smokes a carton of cigarettes a day. In the case of preeclampsia, I’m talking “not healthy” as in the mother’s body rejects – violently and unequivocally rejects - the foreign matter inside it. The foreign matter that, for years, was dreamt about, and hoped for, and prayed for, and cried for (and, quite frankly, paid for).

Women like my friend like to talk about A Mother’s Love; about how they've never known a love so great and how they’d do anything for their children. Well, I’m here to tell you this – I would have done anything for those babies. I would have given my life.

Take me, not them I wanted to beg the doctors - even as they were explaining to me that that simply wasn't possible. Even if I had given my life – even if I had died right then– they still would have died, too. Not because anything was wrong with them. They were just too small to make it. They died all because I wasn’t healthy.

So, did I say all this to my friend? No, of course not. I just kept trying to steer her with the “Yes, but’s. . .,” while silently begging her to keep an eye on her own health for the sake of them both. And I kept listening to her carry on – insisting – about how perfect her baby was.

And then I got off the phone, and whispered to myself. . . Mine were, too.


(Of course, all babies are perfect and the above is not to say or suggest anything about those who have died because of his or her own health condition. I'm just sharing the other side of the story which is apparently little known to those outside our community).


niobe said...

I think people don't take preeclampsia all that seriously because, in the vast majority of cases, the outcome is a good one.

Usually what happens is that the mother develops preeclampsia late in the third trimester and the baby is born, maybe a few weeks too early, maybe a few pounds too light, but alive and healthy, or with "only" (and I use the word advisedly) the usual complications of prematurity or IUGR.

The really bad outcomes are, statistically, outliers. Which doesn't help much -- in fact, quite the opposite -- when it happens to you. Or, for that matter, to me.

Kate said...

Wow, this post gave me chills. Beautifully written. I hate that your friend wasn't worried about something she very much should have been worried about. Is her baby okay?

My clotting issues put me at a risk of these sorts of things I'm told. thank you for such a passionate and beautifully informative post.

Jayme said...

You're right. So many people just don't get it, just blow it off- including unfortunately some doctors!

Mrs. Spit said...

I read things like this and I start to breathe to quickly. I can feel my shoulders tighten, it's like watching a car crash happen. . .

And I'm left wanting to scream. Babies die. Women die. Every 6 minutes in Africa. You don't piss around with this. . . .

Catherine W said...

Oh Bluebird. How heartbreaking to hear your friend talking about her perfect her baby is as if that somehow made everything fine, as if that was any sort of guarantee at all.

I think I might feel similarly when I hear people talking about 'viability day'. Ooofff, most of them don't know what they are talking about. Not really.

As Mrs. Spit says above, you don't piss around with this.

Heather said...

I had a similar experience a few weeks ago, but it was a friend of a friend, so I gave the "advice" through a third party.

The mom was induced, the baby was a little early. Everyone happy go lucky.

In my u/s this morning I had a long chat with last year's resident about how sick I was last year, how they had to weigh the options of "a mom that's not going to make it if we don't deliver and a baby that probably won't make it if we do deliver". The baby didn't make it. I did. People really don't realize the seriousness of this condition. They really don't.

Ya Chun said...

From October's 'Fit Pregnancy': "To manage stress [during pregnancy], avoid horror stories."

Yes, because head in sand is always a sound medical strategy.

Astrid said...

This is a great post. And while this probably wasn't the main point, one thing I took away from it was how irritating it can be when a friend tries to distinguish her pregnancy experience from yours in a "what-happened-to-you-can't-possibly-happen-to-me" kind of way. Now, granted, I wouldn't want what happened to me to happen to anyone else, ever, but the ignorance really upsets me. It CAN happen. Even if you think you're healthier than me and even if you think your baby is healthier. It's insulting when people imply that they are somehow better off than I was because it somehow suggests that there's a logical reason for the hell I went through. Like I somehow deserved it or should, at the very least, have expected it. I know the "it can't happen to me" mantra is a self-preservation exercise that we all fall into at some time or another, but it hurts so much when that kind of ignorance and insulting attitude is rewarded.

JenJen said...

We become mommies from the day that the test says positive and any good mommy would lie their life on the line for their babies. I remember praying while I was in the hospital triage that I didn't care what happened to me but that she had to be okay...Lily was just too small to make it but she was perfect in EVERY way. A stupid placenta screwed my daughter and my stupid uterus threatens my son every day. However we lost our babies becomes our speciality and unfortunately you are now a Phd in Pre-E...

You're a good mommy to the twins and you'll continue to be with this new little one. How close are we know to the BIG ultrasound?

Michele said...

It sounds like hardcore denial. I am so sorry. I hope that it works out for her because if not, she's going to have hardcore guilt to go right along with it.

I know what you mean about begging "take me, not them". I cried that constantly. I would have done anything to take their place.

And BB, your babies are perfect. Always will be. Always.

S said...

Preeclampsia is such a scary thing. I am one of the lucky ones that was struck late in the pregnancy and had a good outcome. Looking back at my records, I get irritated at my doctors. I had +2 proteins often thru the second half of the pregnancy. Also during the second half I was sent to a peri for possible IUGR. I guess that finally a doctor in the 38th week read the chart. Protein was at 3+, I had floaters and had been complaining of upper right quadrant pain for almost 8 weeks (they said it was my gallbladder!!). I had low urine output and a 3 day headache but chalked up it to dehydration b/c I also had HE. They were watching my liver enzymes closely. The crazy thing is after the birth it was discovered that I was a carrier of classic galactosemia which causes low liver enzymes so they weren't getting true reading anyway b/c there was no baseline. I was given mag sulfate and induced. It is scary to look back at the expereience. At the time, I was too sick to really realize that my life and the life of my baby could end.

Nicole said...

Such a great post! Thanks. And your right it probably was denial. Too me I have the opposite problem. After two early miscarriages I am paranoid of everything that could happen with this PG that I know is possible from reading other women's stories.
Thanks for sharing.

Cara said...

Ms. are so wise, and so kind to advise your friend without the worst case scenario. Of course, it sounds like only that might have registered with her. But still.

And THANKS for your appearance in my inbox today. Your support means so much. Did you want any bands??

Incidentally, I think the scariest think about preeclampsia is that it doesn't always present with all the symptoms. One of our group members had 3/4 of the Pre-E symptoms and 3/4 of the HELLP syndrome symptoms and the didn't know which was really the issue. In the end, her life was the one at risk and her baby's was ended.

So sad, and so confusing. Thanks for your post. I'm a little more in the know for it.

LDRN said...

You wrote that beautifully.
And you are absolutely right....and as pp stated, she may not know your pain because she'll only get induced a little bit early...

I hope you are well.
I'd love to hear from you again. BTW, I just started the local CSA so I could try it out. I think I'm going to go through them this winter, too, even though it's a tad more expensive, we love the produce!

Hope's Mama said...

What a wonderful post. I sat here squirming reading your friend's responses. Some people really don't realise that it can happen to them and that we were just like them, before our babies died. Trusting and innocent. And I'm here to tell you (well your friend mostly!) I had that perfect baby, too. 8 pounds and five days overdue, but an infection got in and took her life whilst I was in labour. An infection that came from MY body. Baby was fine and perfect, but even being so big and strong and most definitely viable, she still died. Just. Like. That. It really can happen to anyone at any time. And there are so many awful, awful ways it can happen - pre-e obviously being one of them, and admittedly something I don't know enough about.
I am new to your blog and I have loved reading along. I wish you so much love and luck for this pregnancy and all my heartfelt sympathy for the loss of your very beautiful twins.

Tina said...

You are so right. She is in denial that something could go wrong and her baby could die. We all know too well that this is a very real possibility. And, yes, your babies are perfect. xx

Another Dreamer said...

Ahh, hun (*hugs*) Your post gave me chills too hun.

I hate it when people ask things like that, about something personal that you've been through firsthand, and then brush you off when you tell them stuff. It hurts, and it doesn't make any sense. I'm sorry.

Ladybug Mama of 2 said...

Wow I'm sorry that you had to go through all that. I have had three miscarriages. One later in the pregnancy. It's great to find a friend that knows how I'm feeling. I hope your friend and her child are ok.

Michelle said...

I think she was doing that out of fear. I see so many times people doing things while pregnant that they should not do or things they should take more seriously. It just proves that those that get pregnant easily don't get all that can go wrong. It is understandable because in their experience it probably always does go right. Unfortunately for us, we know different. All we can do is tell people when they ask and try to help when possible. I know it is hard but I think you did the right thing. I hope that all will be ok with your friend and her baby!

Shanny said...

Wow she is in big denial! You did your best with her, the rest is up to her and her doctor. Sorry you had to go through that ordeal with her, hope her and the baby will be allright.

jenn said...

Here from the L&F to say your post really resonated with me. I am one of the extremely lucky ones- diagnosed in my last week with gestational hypertension- I am eternally thankful that my docs didn't mess around & let me go any longer as I presented with 3/4 of symptoms of pre-e within a week of visits. My heart aches for you and your experience, but I have to give you credit for the 'yes, buts...' you are trying to tell your friend.
I hope that she can get through her fear & denial to really listen.

Mo and Will said...

Incredible post. And bluebirds, I am so sorry about the loss of your twins. I hope this woman lucked out, and I suspect she may never understand how close she may have come to disaster.

Tash said...

Remarkable post, and a bit disturbing (not you or your writing, your friend and her doctor's reaction).

Because, like Niobe said, the outcome is usually "eh, we'll just have the baby a few weeks early" sadly this condition is blown off except for those of us in the know. Recently, I was informed of my BIL's/wife's pregnancy at the time of the birth of their child (which is another story). But when it was told to me, my husband said "She had preeclampsia. They had to deliver the baby early." And because no one had told me/us she was pregnant, I assumed it was early, and I thought the baby had died, and I asked, "How far along was she?" "Almost 38w."

I'd like those five seconds of my life back.

I'm really so sorry.

Baby Smiling In Back Seat said...

Everything that was wrong with my pregnancy had to do with my body not being able to handle both babies at once. But all anyone else was concerned about was the health of the babies. "They are perfect, they have always been perfect, that's not the problem" didn't seem to sink in.

I much prefer sick me/healthy them to the reverse. Now, their perfection makes them much healthier as they work through their prematurity. Post-birth, I'm still the one who's sick. Sometimes people ask how the babies are doing, and I answer, "A lot better than I am." They laugh, but I'm not joking.

katie said...

great post. it really bothers me when people don't take preeclampsia seriously. i would not be here and neither would my baby had my doctor not been proactive about it. i had an emergency c-section at 32 weeks and 6 days because of pre-e. when they were delivering her my bp was 200/110, and they found my placenta was pretty much a piece of junk. claire and i wouldnt have made it much longer. i'm so thankful for my dr being on top of things.

angie said...

What gets me is the arrogance of it all, you know. It happened to us but could never ever happen to them. I think pregnant people need to read this post. Thank you for writing it.

TV Watching Mama said...

Just came across your blog... I was diagnosed with preeclampsia at 35 weeks. My only symptom was high blood pressure. My doctor took it very seriously and was way over protective (bedrest, three 24 hour urine tests, 2 hospital vists for monitoring, and every day blood pressure checks for two weeks to get me to full term). He warned me how annoyed I would be with him over those two weeks in order to keep the baby and me safe. Everyday my son (who just turned one) and are extremely thankful for my annoying doctor.

Anonymous said...

the preeclampsia foundation is a great resource for those of us impacted by preeclampsia and/or HELLP. It is an excellent source of support, feedback, and more- It is imperative that pregnant women, all pregnant women, learn about the risks and know what to look for-you can never be too cautious and it's better to err on the side of caution every time. There's a lot of grief, frustration and anger with this condition, regardless of the outcome. Connecting with others who have been down this road really helps.

Jim said...

After reading your story, I thought
I'd share ours.
My wife has preeclampsia right now and is expecting twins.
She had it in her first pregnancy too.
The first time, we didn't know she had it the first time until the 26th week when it came on very rapidly, so much so she looked like the michelin man and she is slim normally.
She was given mag sulphate and an emergency section. The baby was only 450 grams. After 6 months we found out he has cerebral palsy.
A few years later we decided to try again.
This time she is expecting twins, which we were delighted with.
However, from around 10 weeks she had very bad morning sickness and vomiting (all the time not just the morning) and was bed ridden.
She went to hospital several times with Hyperemesis.
At 18 weeks, her face looked a bit "puffy" and she went to the doctors.
She was sent to hospital and was told that her bloods and bp were very bad and it looked like she would need to have a termination as soon as possible.
However the next day, the bloods were much better so we waited. Over the next three days, the bloods went back to normal. Her bp was still high but controlled by drugs.
After 4 days, a scan revealed that one twin had died. The doctors said that this had happened as a result of the PE. Hopefully this will reduce the strain on mum enough to get her to 28 weeks or more. Fingers crossed.
The doctor told us that having PE at 18 weeks is a horrendous situation and statistically has little chance of ending in a live birth < 10%.
It is a "why me" situation. When others seem to sail through their pregnancies and others have so much heartbreak. I hope one day they develop a tablet that removes this curse from the human race.
- I'm sure they will.
In the meantime, it's a case of "be aware" and "do not accept being fobbed off"

3d ultrasounds said...

these photos are amazing and super cute!!! i wish we could get a 3D ultrasound for our little guy!
Following you now :)
btw, you are gorgeous!

Tubal Ligation Reversal said...

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It 's a man a much more in woman's issues ..
I believe that all women should go to learn solution of their problems ..