Thursday, May 31, 2012

My Survivors


Smartie, 4 hours old, 10/2003



Smartie, 8.5


Sweetie, seconds old, 12/2006


Sweetie, 5.5


Monkey and Sassy, 1 day old, 7/2009


Monkey and Sassy, almost 3

Wednesday, May 30, 2012

An Intense Month of Posts

Almost done, ready to relax
Preeclampsia Awareness Month is almost over. I'm almost done with my "Post a Day for the Month of May" challenge. It's been an intense month, but I'm glad to get information about PE and related conditions out there. I hope it is helpful to someone. One more post coming tomorrow, hopefully about the emotional impact of PE. (Just waiting for permission to reprint the article.) After that, I'll continue to post but not every day.

For more information and support, check out the Preeclampsia Foundation.
If you'd like to support my marathon fundraiser, click here.
If you are looking for Survivor Stories, or have one to share, click here.

And an archive of the posts I've made:

On Preeclampsia:
Disclaimer
What Is Preeclampsia?
Why Me? (risk factors)
Trying Again After Preeclampsia
The Maternal-Fetal Conflict
A Nasty Little Protein
Risk Factors Revisited

On Treatment Options:
Bedrest
Exercise
Low Dose Aspirin
Vitamins and Minerals
The Brewer Diet

On the Emotional Impact:
The Aftermath
My Birth Burned Down
What Not To Say
A Fine Line (trigger warning: discusses death of a baby)

Other:
Observer's Bias

Tuesday, May 29, 2012

Treatment Options: The Brewer Diet

Disclaimer: I am not a doctor. This is provided for information only. Please consult your health care provider before starting or stopping a treatment plan.

The Brewer Diet, created by Dr. Tom Brewer starting in the 1960s, claims to be a 100% prevention/cure for preeclampsia. This diet is very popular in the natural birth community. After all, what could be more natural than eating healthy? But how does this diet stand up to research? Does it live up to its claim to prevent PE?

In the 1960s, common obstetric practices and treatments for PE involved many things we now know are harmful, things Dr. Brewer spoke out against. He was correct about those poor practices. He also was correct that eating a quality diet during pregnancy is important for the health of both mother and child. I give him credit for that.

Dr. Brewer believed PE was entirely due to poor nutrition, in particular a lack of dietary protein. In fact, he was so convinced of the role of nutrition in the development of PE, he renamed the condition Metabolic Toxemia of Late Pregnancy, or MTLP.

After spending a number of hours over several days reading the primary websites dedicated to the Brewer diet, I still have little understanding of his basic theory. The gist of it is that the body needs protein to increase blood volume enough to sustain a pregnancy. Without adequate dietary intake, blood volume cannot keep up with the demands of the pregnancy, triggering the cascade of symptoms. How he believed this happens, it is not clear. His own research was not peer-reviewed, and I can find no outside research to support this theory, either in his website's own bibliography or in a search of PubMed.

Considering Dr. Brewer claimed a 100% success rate, it would be reasonable to ask, has any woman followed the Brewer Diet and gotten PE anyway? A search of the Preeclampsia Foundation's forums quickly shows there are many women who have, some of them quite severely. But according to this website, the answer is no, there has never been a woman who *correctly* followed the Brewer Diet and got sick anyway. There are only women who *think* they were following the diet, but they couldn't possibly have followed it correctly. Therefore, their experiences do not count as a failure of the diet.

Dr. Brewer himself said in his Aphorism No. 5, "The well-fed, well-salted, well-watered, NON-DRUGGED pregnant lady often develops water retention ("edema" or "oedema") and blood pressure rise (”hypertension”) and protein in her urine ("albuminuria") and "excessive weight gain" which are mistakenly diagnosed as "pre-eclampsia."" In other words, if a woman who is not on his diet has these symptoms, she has PE, but if she has the exact same symptoms while on his diet, it's just a normal part of pregnancy? Um, no. It's PE, and it's dangerous, even more so because a woman might not get the treatment she desperately needs because she's been told her symptoms are normal.

Then there's this claim of "mistaken diagnosis." If a woman has symptoms of PE but is well-nourished to Dr. Brewer's standards, it must not be PE but rather another condition that causes the same symptoms. Um, a condition exactly like PE? That causes the exact same symptoms? But NOT PE? Because, again, it couldn't be the diet that failed. It must be this mysterious Not-PE condition. Hm, could this be a case of Observer's Bias

(Might I point out that ANY treatment plan can claim a 100% success rate if one simply refuses to acknowledge the failures.)

Another good question to ask would be, has any woman NOT followed the Brewer Diet and NOT gotten PE? And the answer is of course! Every year around the world, hundreds of millions of pregnant women eat a diet that does not meet Dr. Brewer's standards, yet without getting PE. This can range from women in America who eat processed junk and fast food, to women in famine-stricken Africa who do not get enough calories, period, let alone 100g of protein, to vegans who eat a generally healthy diet overall but not quite "perfect". Why do these women NOT get PE when women who followed (or "thought they were following") the Brewer diet do? Clearly, there must be more to it than diet alone. But once you acknowledge that something else can be in play, Dr. Brewer's theories fall apart.

Oh, but maybe it's similar to Type II Diabetes. One must have a predisposition for the condition. If you don't have that predisposition, you can eat whatever crap you want and be fine regardless, but if you DO have the predisposition, you must be very careful about what you eat. If this were true, you would expect to find that women with the worst diets have the highest rates and most severe cases of PE, while those who have generally good (but not quite perfect) diets would have the fewest and mildest cases. But the largest US study on PE and diet ever done (looking specifically at calcium, not protein, but with detailed diet evaluations of all participants) found no difference in the protein intake among those who did and did not get PE, nor did they find any difference in the PE rates among women with poor, fair, and good diets.

But Dr. Brewer was right about those bad obstetric practices back in the '60s. And he was right that traditional treatments for hypertension, in particular salt restricion, wouldn't help (because hypertension is merely a symptom, not the primary problem). So why couldn't his diet theory also be correct?

Considering what we now know about the role of sFlt1 in the cascade of symptoms, his dietary protein theory just doesn't make sense. Oh, but there's an answer for that, too. Just because all women with PE have elevated sFlt1 and no woman without PE has elevated sFlt1, that doesn't mean sFlt1 has anything to do with causing PE. No, if anything it was poor diet that caused the elevated sFlt1, even though women without PE who eat a poor diet don't have elevated sFlt1, and women with a good diet and PE do. I've said it before, I'll say it again: Observer's Bias.

Oh, but what about all the women who follow the Brewer Diet and don't get PE? Who are true believers that it helped them? Well, 90% of women will never get PE whether they follow the diet or not. It doesn't mean the diet saved them. But what about women who got PE the first time around, then discovered and followed the diet, and didn't get PE the second time around? Again, most women who get PE only get it once. This anecdotal "data" doesn't prove it works.

Can I say with certainty that the Brewer Diet doesn't work at all? No, I can't. PE is a very complex condition, and we have a long way to go to unravel all the risk factors that go into it. There may be some women out there for whom the Brewer Diet can make the difference. But it DOES NOT live up to its claim of 100% prevention/cure. It merely ignores failures as either "normal", "misdiagnosed", or a failure of the woman who "didn't follow it correctly".

Monday, May 28, 2012

Treatment Options: Vitamins and Minerals

Disclaimer: I am not a doctor. This is provided for informational purposes only. As always, consult your health care provider before starting or stopping a treatment plan.

Diet is such a complex issue. I plan to cover it in several posts. Today's post focuses on vitamins and minerals.

We all know how important it is to eat healthy, and especially during pregnancy. We all know we should be eating whole foods with lots of fresh fruits and vegetables, whole grains, lean meats, and healthy fats. We know we should not be eating processed foods or lots of sugar or refined grains. Eating well will keep you and your baby as healthy as possible so you both have the best chance of surviving any complication that may come up, including preelcampsia and related conditions. But will diet prevent PE?

This 2008 study looked at the blood work of women who already had preeclampsia and compared it to both healthy pregnant women and non-pregnant women. It found women with PE had lower levels of antioxidant enzymes and vitamins A, D, and E. This shows there is a connection to nutrients in the blood and preeclampsia. But the question remains: did deficiencies cause PE, did PE cause deficiencies, or is there some other factor at play in both of these? More importantly, would correcting these deficiencies prevent PE?

This recent review looked at taking antioxidant supplements as a way to prevent PE. It found no improvement in outcomes. This 2008 review actually found an increase in pregnancy induced hypertention with antioxidant supplements, although it did not appear that these cases progressed to full PE any more often.

This review looked at vitamin E supplementation. It showed mixed results--when analyzed one way, the data showed decreased PE rates, but another way showed no change. A similar mixed result of data occured in this review looking at supplementing vitamin C. It did show increased risk of preterm birth with vitamin C supplementation.

This article reported that many pregnant women are deficient in vitamin D. Not all women who are deficient develop PE, and not all women who develop PE are deficient, but a greater percentage of women with PE are deficient than those without PE. So it appears vitamin D deficiency raises risk of PE, but it's not an absolute connection. This review found that supplementing women deficient in vitamin D did raise the levels in their blood, but that did not change the rates of PE.

This study found calcium deficiencies in blood work of severely preeclamptic women compared to healthy pregnant women. This large study attempted to prevent PE through calcium supplementation. The results were no difference in PE rates among the supplemented and placebo groups.

From the above studies, it appears improving intake of various vitamins and minerals offers little to no benefit in the prevention of preeclampsia. Yes, we should definitely be eating healthy. But we can't count on diet to prevent PE.

Sunday, May 27, 2012

Treatment Options: Low-Dose Aspirin

Disclaimer: I am not a doctor. This is provided for information only. Please consult your health care provider to discuss the treatment option(s) that are right for your specific case.

So far we've discussed bedrest and exercise. I'm still working on nutrition, which will be covered in several posts this week. Today I want to focus on low-dose aspirin and other anticoagulants.

Preeclampsia is associated with changes in the way a woman's blood clots. One theory that has emerged is that blood thinners could counteract these changes and prevent PE. Several studies were done on aspirin in pregnancy during the 1980s and 1990s.

This review of multiple studies, explained in more understandable terms in this article, did find a small but real reduction in preeclampsia rates when women at high risk took low-dose aspirin. It is important to note that it doesn't help everyone. So far, researchers have not found a way to determine which high-risk women will benefit and which will not. This study found further reduction of risk (though still not large) when low-dose aspirin was paired with low molecular weight heparin, a prescription blood thinner.

This article points out there are risks involved with low-dose aspirin as well, although those risks are small, and questions whether it is worth giving it to so many women who won't benefit from it just to save the few who do.

Aspirin therapy is not currently recommended to the general population of pregnant women, but for those who have a history of severe PE and/or have multiple risk factors, it is worth discussing with your doctor if it is a reasonable option.

Saturday, May 26, 2012

Survivor Saturday: Tracy's Story

I ran 10 miles in honor of Tracy and her children today. Tracy had hypertension outside pregnancy and a family history. She developed PE post partum. This story highlights the lingering emotional effects of a high risk pregnancy and traumatic birth.

Tracy's Story

I am chronically hypertensive and have been most of my life.  That and the fact that my mother developed preeclampsia while pregnant with me and had to be induced made me "high risk" for preeclampsia.  I was already on medication for my high blood pressure when I became pregnant with my first child, and my pregnancy was overseen by my family practice doctor who consulted with a perinatologist who specializes in hypertension in pregnancy.  The perinatologist added more medications and, halfway through my pregnancy, as my blood pressure began to rise, he took over management of my pregnancy.  As my pregnancy progressed, I began to feel less and less in control of how things would develop.  At one appointment, I recall the doctor telling me that I would be having an epidural during my labour to help control my blood pressure.  I had been hoping to avoid an epidural.  But I was young, this was my first pregnancy and I didn't really have any other sources of information back then.  The internet was not nearly the resource of information 15 years ago as it is today! 

At around 28 weeks or so, as my blood pressure began to rise, the doctor had me coming in 3 to 4 times a week for fetal monitoring and to have my blood pressure checked.  At 31 weeks, while being monitored on the L&D ward, the nurse took my blood pressure and it had sky-rocketed.  The doctor admitted me and started to add and change medications while keeping me on continuous blood pressure monitoring and frequent fetal monitoring. I was prepared for the possibility that the baby might have to be delivered prematurely and, after a few days in hospital, when my blood pressure had appeared to stabilize, I was able to tour the NICU.  I was in hospital for a week when the doctor was satisfied that the medications were working and the baby was still doing well.  I was sent home on strict bed rest for the rest of the pregnancy and told that, if I made it that far, I would be induced at 37 weeks.  I'll never forget sitting in the doctor's office during a follow up appointment and watching as  Dr. E. pulled a little black notebook from his coat pocket and penciled in my baby's birthday. 

For five more weeks, I returned to the hospital 3 or 4 times a week for fetal monitoring and spent the rest of the time on bed rest.  Between late pregnancy, high blood pressure and weeks of bed rest, I found I could barely shower without completely wearing myself out.  I was growing crazy in the house but was too worn out even for guests when they visited.  A week before I was to be induced, I underwent a miserable amniocentisis to determine the baby's lung maturity. Then, I was told to report to L&D at 36 weeks and 5 days, to check in and prepare for being induced the next day. 

We checked into L&D at the appointed time and I was offered the suite with a whirl pool as it was available.  I turned it down, under the impression I wouldn't be able to use it, which I later regretted.  I mightn't have been able to use it, I don't know, but it might have helped if I could have.  A prostoglandin gel was applied to my cervix, DH and I had some dinner, watched some television and then went to sleep.  Along with my meds, I was given a sleeping pill which was lovely. Probably the most (only!) enjoyable part of my hospital stay! 

As expected, the prostoglandin gel had had little effect on my cervix by the next morning and a pitocin drip was started to get labour going.  The contractions weren't too intense for the next couple of hours and I recall DH and I just chatting with each other and staff that wandered in and out, watching the read out on the fetal monitor and watching for contractions. 

Most of the labour is a blur to me now as it was so long ago.  I recall the contractions becoming worse as the day progressed and trying a warm shower, which didn't help too much.  Finally, I got some pain relief (Demoral, I think?) which really didn't help much at all.  I remember feeling like my entire abdomen was on fire and, as I was trapped in bed on the monitor, I couldn't do much about it.  At one point, the baby's heart rate dipped very low and they put me on oxygen for the rest of the labour.  An epidural was ordered but I had to wait for what seemed like an eternity before the anesthesiologist finally came.  The epidural managed to numb all of my pain except for the lower right quadrant, which continued to feel as if it were on fire.  I was exhausted and, once the epidural had kicked in (well, mostly) I started to drift in and out of sleep. 

At around 4 AM I was told it was time to push.  I remember feeling completely confused.  Push how? Where?  With what?  I couldn't feel anything and had no idea what I was supposed to be pushing or what to push with.  It was bizarre.  Just before the pushing began, however, the epidural had begun to wear off and the pain had started return. At first, I just did what I thought they were telling me to do with no idea whatsoever if I was actually doing anything.  I couldn't feel it.  But as the feeling came back, the pushing started to feel almost involuntary.  I remember everyone counting and instructing me when to push and how long.  I couldn't push for as long as they wanted.  It felt all wrong and I thought I was doing it all wrong because I didn't know what I was doing. 

After nearly 39 minutes of pushing, the baby was no longer descending and they noticed that every time I pushed, her heart rate dropped down way too low.  They told me to stop pushing and I recall the room suddenly filling with people.  No one told me anything was wrong but I knew something was happening when the room suddenly filled like that.  From what I could later tell, the cord was wrapped too tightly around the baby's neck to allow her to descend any further and every time I pushed, the circulation in the umbilical cord was cut off which caused her heart rate to plummet.  An episiotomy was cut and forceps were brought out.  I was already in horrible pain and the pain of the forcep delivery was indescribable.  The baby's head was delivered, the cord clamped and cut, and then the rest of her was born.  I didn't get to see her face. The first glimpse I had of her was of two tiny purple buns as they whisked her away to a warming table to examine her.  I don't think she cried right away.  They were concerned with her breathing and told us they would be taking her to NICU for observation.  DH told them he'd like for me to see her first before they took her away and they wrapped her up and put her in my arms.  I was able to hold her for a few minutes, then she was taken to NICU. I sent DH with her.

After a period of time, Tory was brought back from NICU by a nurse who announced "there's nothing wrong with this baby, she doesn't need to be in NICU!" Another nurse then bathed her and dressed her in the little white preemie outfit we'd brought with us to the hospital.  Shortly after, a photographer came in to take her first portrait and then we were moved to the maternity ward. 

We were released to go home on Tuesday.  I was on a number of drugs for my blood pressure and lasix for the water retention (which did nothing to help establish my milk supply, sadly) and we were told to have Tory's bilirubin levels checked at Children's hospital every other day. We took Tory to have her bilirubin levels checked on Wednesday and Thursday and on Friday morning, a nurse came to our home to set up a special bili light unit which Tory was to stay under for the next day and a half or so.  We had to leave her under the lights except to feed her and she was also wrapped in a little "glow worn" vest around her middle.  Breastfeeding was not going well, both DH and I were overwhelmed and exhausted, we were supplementing with bottles of formula and the heat was oppressive.  I was feeling increasingly worse, but put it down to the heat and exhaustion. 

On Sunday, Tory was finished with the bili lights and we gave her a bath.  We'd been in the house all week and we decided to go shopping.  We pulled ourselves together, packed Tory up and headed to the local mall.  We'd been walking around in a drugstore for a little while when I started feeling very strange. It's hard to explain, but I just didn't feel right.  We went home and DH checked my blood pressure.  It had spiked really high.  We waited a bit to see if it came back down with some rest, but it didn't.  DH called the hospital and we were told to come in. 

At the hospital, my blood pressure was still very high and they did some labs and determined I had developed preeclampsia.  I was admitted and started on mag sulfate.  I hated the mag. It made me feel like I was going to come right out of my skin.  I felt completely out of it and so foggy I couldn't even carry on a conversation, but my body was so restless and uncomfortable, I thought I didn't know what to do with myself.  I started to panic that Tory would be hungry by now but I just couldn't nurse her. I couldn't even hold her.  I watched as DH gave her a bottle and felt awful. She was getting too many bottles and too much formula and I felt so defeated.  I couldn't stand the restlessness anymore and finally complained. I was given something to help with the restlessness, perhaps a sedative, I don't remember anymore, and it helped.  I think I slept.  It was Sunday evening, one week to the day since Tory was born, and here I was back in the hospital. I spent the first few days in and out of it, I think because I was just so exhausted.  Tory stayed with me and DH was also able to stay and care for her. I felt resentful that I had developed preeclampsia in spite of the fact that Tory's birth had been induced to avoid this very thing.  I wondered if we could have just let her birth come spontaneously, since the induction hadn't prevented preeclampsia anyway.  Later, someone remarked "Wow, it's a good thing you were induced before the preeclampsia developed!"  I hadn't thought of it that way.  But they were right.  At least, my preeclampsia didn't involve my baby. 

I was in hospital for a week and sent home with new medications.  In the weeks and months that followed, DH returned to work and I continued to struggle to breastfeed Tory and get sleep where I could. I was still exhausted and I was very disappointed how Tory's birth and first weeks had unfolded.  I started to lose interest in everything and had decided I was an awful mother. I told DH I wanted him to stay home and care for Tory and I would go to work.  When I saw pregnant women, I honestly pitied them.  I swore we would never have another child and was so convinced of this that I felt guilty and sorry for Tory that she would be raised an only child. I became so miserable that I felt like I was moving through a thick fog and only looked forward to when Tory was someday start college and all this struggle to breastfeed, the sleepless nights, and the guilt and disappointment over her birth would be far behind me.  When Tory was about 3 months old, I was diagnosed with severe PPD and started medication and therapy.  It made all the difference and I started to feel like a human being again. Even happy.  Things improved steadily after that.

My experience with preeclampsia has put a cloud of fear over each of my subsequent pregnancies.  I've tried baby aspirin therapy, vitamin C and E therapy, the Brewer diet and I can't remember what else.  I've had problems with my blood pressure with each of my pregnancies, but thankfully have not had a repeat of preeclampsia. And, of course, I worry for when my daughters become pregnant some day. I hope, by that time, we will understand preeclampsia better and be able to prevent it completely.

Friday, May 25, 2012

Writer's Block

I need to tackle nutrition. I know I need to, but I don't know where to start. There's so much that goes into it, so much research to wade through. And then there's the emotion that goes along with it, in particular a certain diet with false promises that has led to pain for people I know. It's a topic where my two roles--PE advocate and natural birth advocate--collide, and it's not pretty. I want to present the facts without the stain of emotion, but at the same time, the emotional impact must be made clear.

Sigh.

So I'm taking a few more days to work on it. Tomorrow's post is a Survivor Saturday, so that buys me some time. And for tonight, I'll present some fundraiser tips. Really, just one.

Use regular mail.

I've found I get very little response from e-mails, Facebook, blogging. I've heard a lot of fundraising experts talk about "tapping into the resources of social media", but I don't think it works out as well as they think it will. It's too easy to see a request in your feed, think, "Oh, I should send them something," and move right on to what someone ate for dinner or the funny thing their kid did.

But an actual letter? In the actual mail? It sits on their desk, calling to them. When they sit down to pay the bills, they might just add a check for your cause. And if you include a self addressed stamped envelope to mail it in, well, they can't let that stamp go to waste, can they?

I am blessed to be a part of a very generous family, church family, and social circle. I sent out 200 letters last week, and I'm already more than 40% to my goal (though I don't need to stop at $5000). I am so thankful for everyone who has donated and is considering donating.

This week, the online support group at the Preeclampsia Foundation saw a woman welcome her baby after a very scary few weeks. We were all praying for them both. We also welcomed a woman who just lost her sister to eclampsia and is wondering how to help her brother-in-law raise a motherless baby, and a grandmother whose daughter lost a baby and nearly died herself, and is now pregnant again and having panic attacks. My hope is that my children will not need to spend their pregnancies waiting for a ticking timebomb to go off, that my grandchildren will not be growth restricted or born too soon. And every dollar brings us closer to that goal.

Thursday, May 24, 2012

Fundraising

I'm too tired to write the post I had planned, so I'll give a little update on my fundraising efforts. I sent out 200 letters last week. So far, I've raised $1590 of my $5000 goal. If this keeps up, I may have to raise my goal! Thanks to everyone who has contributed so far, and to all who are considering it. If you'd like to help, click on the "What AM I Running For" link at the top of the page.

Wednesday, May 23, 2012

Treatment Options: Exercise

Yesterday, we explored the research on bedrest. Today, we're going in the opposite direction: exercise. Much like bedrest, it has been recommended for years that healthy pregnant women exercise 30 minutes a day. The primary reason for this recommendation is to prevent complications like preeclampsia and gestational diabetes. The reasoning is that, since exercise can have a positive effect on chronic hypertension outside pregnancy, it would have a similar effect within pregnancy.

The problem with this assumption is that the mechanism behind preeclampsia is completely different from chronic hypertension. In fact, high blood pressure is not the primary problem, only a symptom of that problem. So how does daily exercise as a prevention hold up in actual research?

Most of the research showed a small benefit to exercise before and/or during pregnancy as a prevention for PE, according to this review. It also showed no harm with regard to preterm delivery or low birth weight.

Then we come to this study, one of the largest ever done on exercise and PE. It looked specifically at exercise in the first trimester, categorized women on how long they exercised weekly, and looked both at mild and severe PE. The results were rather astonishing. After adjusting for certain risk factors, researchers found NO benefit to exercise on the rate of PE, and women who exercised the most (270 minutes per week or more) had higher rates of severe PE.

There needs to be more research done to confirm or discount this study. While exercise is an important part of healthy living, and it's especially important to be healthy while pregnant so you and baby have the best chance of surviving any complication that may come up, it doesn't appear to prevent PE. While light exercise isn't harmful, I would be careful not to overdo it.

Disclaimer: I am not a doctor. This is provided for information only. As always, consult your medical professional before starting or stopping a treatment plan (or exercise regimen) in pregnancy.

Tuesday, May 22, 2012

Treatment options: Bedrest

While recent research into the causes and mechanisms of preeclampsia has been very exciting and informative, finding a treatment has been painfully slow. No one wants to be responsible for harming unborn babies, so developing new medications is done very cautiously if at all. Instead, the focus has been on fairly innocuous treatments like low dose aspirin, dietary supplements, and lifestyle changes. I plan to feature these over the next few days. Keep in mind, I am not a doctor. This is provided for information only. Please consult your health care provider before starting or stopping any treatment plan.

Bedrest has been the go-to advice for many pregnancy complications including preeclampsia since the 1950s, a time when there was little else to be done to control high blood pressure in pregnancy, when there was no way to monitor the baby for adverse effects like growth restriction, and when there was a poor outlook for any baby born before 36 weeks.

Today, there are ways to manage high blood pressure with medication, the baby can be monitored with regular ultrasound, and preemies are much more likely to survive. However, bedrest remains a common recommendation for women with preeclampsia. There was little evidence to support it in the '50s, and little quality research has been done since then.

This 2005 review of four studies found no reduction in the perinatal death rate (the death of a baby before, during, or shortly after birth) and no improvement in low birth weights for women on bedrest for PE. Two of the reviewed studies did show improved outcomes for mothers with severe hypertension. One study found no difference in outcomes between partial bedrest or full bedrest, although it doesn't explain what is meant by partial bedrest. Two studies found a small improvement in the rates of severe hypertension among women who had no protein in the urine, and a marginal improvement in preterm birth among the same population.

This review also pointed out the cost of bedrest: loss of income for mothers previously working, increased risk of blood clots, muscle atrophy and bone demineralization, general inconvenience. Based on this review, it appears the costs of bedrest outweigh the benefits.

More recently, this 2008 study looked at women on hospital bedrest for reasons other than PE (preterm labor, premature rupture of membranes, incompetent cervix, etc) to see how their rates of PE compared to women not on bedrest. The result: a significantly reduced risk of developing PE and a lower risk of intrauterine growth restriction. The conclusion: "When strictly adhered to, bedrest may be an effective measure in the prevention of preeclampsia and early intrauterine growth restriction."

My non-scientist take on this study: these women were on bedrest before any sign of PE showed. Since 90% of women never get PE at all, and most of those who do so get it only in a first pregnancy without any other known risk factors, it would be impractical to put this into practice. How would you know ahead of time which women would benefit? However, for someone like me who has a history of PE more than once, has several known risk factors, and would be at high risk in any future pregnancy, it could be beneficial to start bedrest before any symptoms show. This also may become more relevant in the future when an early detection test is finally developed.

Ultimately, bedrest remains controversial and under-studied as a possible prevention or treatment for PE, though it is a popular recommendation.

Monday, May 21, 2012

A Fine Line

Trigger warning: This post includes talk of the loss of a child.The last thing I want to do is add to the pain of bereaved mothers. Please use your own discretion.

One of the hardest things about treating preeclampsia is that it involves two patients, mother and child. The only cure is birth. But what if PE strikes before baby is ready to be born? How do you balance the needs of the mother with the needs of the baby?

If PE strikes after 37 weeks, it's a fairly easy decision. At that point, baby will most likely do fine. But before that point, it becomes a very fine line in staying pregnant long enough to give the baby the best possible chance while not endangering the mother. There comes a point, though, where Mom is sick enough, baby won't be any better off inside than out.

I got just a small taste of that decision. When I was diagnosed in my first pregnancy at 35 weeks, I was already too sick to wait. It was very hard for me to know my baby had to be born prematurely because of me. I would gladly have risked my life for her benefit, but at that point it wouldn't have helped her. My body was shutting down; she would have been oxygen-deprived as my lungs shut down and exposed to the toxins as my liver shut down. Her best chance was birth, just as mine was. Thankfully, at 35 weeks her chances were very good. She did spend time in the NICU, but did really well all things considered.

I had another small taste when I was diagnosed with PIH at 22 weeks with my twins. I knew the average time from diagnosis to delivery is 2 weeks. How does one prepare for the decision to induce labor at an age where only 10% of babies survive? Thank God, I was a slow progresser that time. I carried my twins an astounding 14 weeks after diagnosis, and they were born very healthy. I know how miraculous that is, and I don't take it for granted.

In my time on the Preeclampsia Foundation's forums, I've seen cases of mothers who had to give birth very early, including several who lost their babies. My own experience pales in comparison to these heartbreaking cases. I can only imagine the pain those mothers felt. I've also seen cases where the mother died, their relatives reaching out for help to understand what happened.

That is why I am raising money for the Preeclampsia Foundation, to find a way to end these horrible conditions. No mother should have to say goodbye to her baby. No mother should have to face these kinds of decisions, walking the fine line between giving birth too soon or too late. If you would like to join me, details of my fundraiser are here.

Sunday, May 20, 2012

What Not to Say

It can be hard to watch someone you care about go through a difficult time. Whether it's a dangerous pregnancy, a traumatic birth experience, the loss of a child before or after birth, you don't want them to feel pain or sadness. You just want to take it away and make them happy again.

Or maybe you don't even understand why they're upset. If you had gone through something like that, you don't think you'd have reacted this way, so why is it so hard for her? Why hasn't she gotten over it yet?

No matter what you say, you can't take away another person's pain. She has the right to feel what she feels. She will work through it in her own time and her own way.

There are, however, at least two things I would recommend against saying.

1. "At least..." At least you have a healthy baby. At least you know you can get pregnant. At least you don't have to get up in the night to take care of your baby (actual quote said to a grieving mother who lost a child!).

Never, ever, say at least. I'm sure it's said with the best of intentions: if only she can look on the bright side, she'll be happy and won't be in pain any more. But what it really sounds like is "The bad thing you went through wasn't *that* bad. If X had happened, then you'd have something to be upset about, but you have no right to feel bad about the not-so-bad thing that happened."

Grief is not a competition. Something bad happened. She has the right to feel what she feels. "It could have been worse" doesn't change that.

Now, if the woman herself wants to look at the bright side, that's great! It's a good sign of healing. But it's not something she can be forced into before she's ready.

2. Any variation of "It's God's Will." God has a plan. God will use it for good. God is teaching you something important.

This may come as a surprise to people who know me in real life, and I may even offend some of them with this. I am a committed Christian. I do believe things happen according to God's plan. I do believe God will use bad things for good. I do believe God can use it to teach us something. I still find it upsetting when someone tells me this.

Again, I'm sure it's said with the best of intention. You can take comfort in knowing good will come from the bad, right? But "It's God's will" sounds like "You aren't allowed to feel bad about the bad thing that happened. How dare you question God?"

Jesus Himself felt sadness. Jesus Himself felt anger. Dare I say, He even felt fear. If the Son of God can feel these things, surely I can, too. Trusting that God has a plan doesn't automatically end those emotions. I can take comfort in trusting God's plan while still feeling and working through my pain.

So what should you say? As I said before, nothing you say will take away the pain. BUT a little empathy can go a long way. "I'm sorry" may sound trite and cliche, but it acknowledges what happened and allows the woman to feel what she feels. "I'm sorry you had to go through that. It must have been hard."

I'm sure there are other things that people found helpful or upsetting. Feel free to comment and share your thoughts.

Saturday, May 19, 2012

Survivor Saturday: Nicole's Story

Today I have the privilege of sharing Nicole's story. I ran 8 miles in her honor today. She told me she wrote this story with tears streaming down her face. The emotions of a traumatic birth experience can last long after the body has healed. I hope it helped to get some of that out. I've touched on the emotional aspect of PE, but I think it deserves further discussion. I plan to write more on it this week.

Nicole's Story

I was 26 years old, married, well-educated, pregnant with my first child, and looking forward to a homebirth with midwives.  I had read multiple pregnancy books but felt confident that my pregnancy and birth would be perfect.  At 36 weeks I had my home visit from the midwives in anticipation of the birth.  A few days later, on a Friday, I finished my last shift at work (a stressful IT position) and looked forward to having a few restful weeks before our little one arrived.  On my last day of work I started feeling really uncomfortable and was having difficulty getting my shoes on.

The next morning I had a hard time getting out of bed, and my feet and legs were freakishly swollen.  I chalked it up to the final weeks of pregnancy, and started my day.  I was expecting my three sisters for dinner, a movie, and a sleepover that evening so I had to clean my house and prep food.  I busily prepared for their arrival all day, but started having strange visions of what looked like shooting stars.  I wanted to go to the movie store to pick up the rental, but could not fit any of my shoes on my feet.  I called one of my sisters and asked her to pick the movie up for me as I was not feeling at my best.  Later, I kissed my husband goodbye so that he could spend the night with his parents while my sisters could have a private girly evening.

When my sisters arrived, they took one look at me, and then my legs and feet and immediately expressed their concern.  I told them it was normal pregnancy swelling but, with seven children between them, they insisted otherwise.  They wanted me to go to the hospital to get checked out, but I declined.  We ate dinner and began to watch a movie, but I started to feel really unwell.  My older sister drove me to the hospital in our small town, and I had to wear slippers as even my husband’s shoes would not cover my feet.

When we arrived at the ER, the nurse looked at my big belly and reminded me that this hospital did not have a labour and delivery unit, and that I’d have to go the hospital a few towns over for that.  I laughed and said that I wasn’t having a baby that night and just wanted to get checked out.  She checked my blood pressure and practically sprinted out of the room to get the doctor.  A urine test detected protein.  I had pitting edema.

The doctor told me that he needed to transfer me to the bigger hospital and that I would have the baby that night.  I assured him that no such thing would happen, as I had a home birth planned and my husband was not available.  Detecting a stubborn one, the doctor called the midwives to speak with me.  There was some kind of miscommunication, and the midwives asked him to discharge me and they would check on me the next morning (a Sunday).  Knowing what I do now, I will never understand how this discharge could have happened.  My sister had managed to reach my husband (in this time before cell phones), and he had rushed to the hospital by this time.  We all returned to our house.

The midwife showed up promptly first thing in the morning, and was immediately concerned.  She said I had the highest blood pressure that she had ever seen in a pregnant woman.  She wanted to know if my bag was already packed because I was to immediately get to the hospital.  My husband and sisters panicked a little, and we rushed to the hospital.  Several tests were completed at the hospital, but they had a baby boom that day and the doctor was telling the midwives that he was dead tired and unable to think straight that day.  He wanted to induce, and I insisted on waiting a little while longer for the natural birth I had been dreaming about.  Nobody had clearly stressed the urgency of the situation to me.  I went home.  At this point I had gained over fifteen pounds in a period of two or three days.

The doctor and the midwife further discussed the case that evening, and the doctor indicated that he wanted to call me to come back to the hospital.  For whatever reason, I did not get the call back.  This is entirely unbelievable.  I was advised to rest on my side and not get up.  I returned two days later for a scheduled induction but again the L&D department was overcrowded so I sat in the hallway for hours waiting for my turn in a room.  I was really upset all this time at the loss of the perfect homebirth that I so badly wanted.  I finally was induced at noon, and started pushing by 11:00 p.m.  Pitocin was never required, and the gel alone had worked at inducing the labour.  An IV was hooked up and magnesium sulfate was kept in the room in case of seizure, but never used.  The birth was as natural as possible given the circumstances.

The doctor on call had worked in the Yukon, and was accustomed to working with midwives.  He was happy to sit in the corner reading a newspaper while the midwives delivered the baby, which is a rarity in OB doctors in cases where care has been transferred from the midwives.  At about 1:00 a.m., Ethan Joseph was born weighing exactly 6 lbs.  There were indications that his growth had retarded in utero, but at this time I cannot recall how they knew this.  We were blessed that he arrived when he did.

Tests returned after the baby was born indicated that I had some liver damage, my blood pressure remained elevated, but the edema started to subside.  I wanted to leave the hospital immediately after Ethan was born, but was asked to stay for a short while.  At my insistence, I was released later that evening with the midwives following up the next morning.  It took a while for my blood pressure to stabilize (about two weeks or so seems about right).

I really mourned the loss of the stress-free birth that I had anticipated, and I did experience some post-partum depression after Ethan’s birth.  I had experienced some problems with breastfeeding at the time as well that left me feeling that my body was entirely inadequate to be a mother.  I felt altogether like a failure.  I cried constantly and my husband didn’t know how to help me (his tough as nails wife).  I made connections with an online group of mamas during this time that I will treasure for my entire life, and it was this group of fine women who understood how I felt and helped me through this difficult time.  Ethan gained weight slowly but surely, and he is a strong AAA hockey player these days.

I did not have pre-eclampsia during my second pregnancy, but every time my blood pressure went up slightly, my feet felt swollen, or I was generally not feeling well I felt a sense of panic.  I had a poor experience with a terrible OB that my midwives that had called for a consult when my blood pressure was temporarily up.  That birth also ended up being a hospital birth, but for an entirely different set of circumstances.  Thinking of the circumstances regarding both births can still reduce me to tears sometimes, but I have two healthy children and for that I cannot be more thankful.

Friday, May 18, 2012

Training Update

Well, I had a good post planned for today but ran out of time to write it. This weekend is crazy busy for me. So I'll do a quick training update and leave it at that.

Race day is 13 weeks away! Wow, that gave me a sudden pre-race rush. This week is supposed to be a push week with 14 miles scheduled, but since it's so busy I did the 14 last week and plan to do just 8 tomorrow. It's warming up here, and I don't do as well running in the heat. Yeah, I signed up for an August race. Training will be tough, but I can do it.

I sent out 200 letters for my fundraiser. If you would like to join me in helping the Preeclampsia Foundation, there's more information here.

Tomorrow is another Survivor Saturday. If you have survived preeclampsia or a related condition, I'd love to hear your story. More info is here.

And now off to bed. Lots to do tomorrow.

Thursday, May 17, 2012

My Story Part 3

The night before giving birth, 35+5 weeks
Since my second round of PE was milder and later than the first, I felt no hesitation in trying for a third child. I was confident I could manage another pregnancy as far as PE was concerned, and I was determined to manage the birth better as well. After my disastrous second birth "burned down", I was prepared with a fire extinguisher: lots of education on birth interventions, risks and benefits, the research supporting them (or not), and knowing under what circumstances I would and would not accept them. I was even looking into the possibility of a home birth. I'm not sure I would have qualified given my complicated history and very high risk status, but before I had a chance to interview any midwives, I discovered (in the ER on Christmas Eve, which is a long story itself) there were not one but TWO heartbeats!

My risk of PE was already high having had it twice before, but having two placentas and two babies meant even higher risk. I knew my complicated history plus twins equaled another hospital birth. I got recommendations for natural birth-friendly doctors in my area and selected a new practice with two OBs and a CNM. I was to see the CNM for most of my prenatal care, and both she and an OB would attend my birth. I also consulted with a MFM (maternal-fetal medicine specialist) an hour away at the hospital I would be transferred to if necessary.

One of the two doctors was randomly assigned as my primary. We didn't get along. At my 20 week appointment, she wanted to talk about getting my c-section on the schedule. I told her I wouldn't consent to a section without legitimate medical need, and there was no need yet. She said I had to have an epidural during labor. I said I wouldn't consent to that either. She then said she would require me to have the epidural placed even if I had no meds in it so it would be ready when (not if) a section became necessary. So much for the natural-friendly doctor, the best of both worlds, I had been looking for.

I really debated about switching practices even though the CNM and I had really clicked. Luckily for me, the two OBs had a falling out. The first one left the practice before my next appointment, and I ended up with the other who was much more natural-friendly and respectful of patient rights.
Monkey and Sassy
Throughout my pregnancy, I took low dose aspirin, calcium, vitamin D, and extra folic acid in addition to the standard prenatal vitamins. There is varying research on each of these as to whether they can help prevent or slow PE, but I figured it couldn't hurt. Obviously, none of them prevented it, but it's still possible one or more helped slow it. I also credit the low-dose aspirin for making the difference between my growth restricted singletons and my normal sized twins.

I asked to be tested for underlying disorders that could raise my risk of PE, something that probably should have been done earlier given my history. That's when we found I have a blood clotting mutation, MTHFR a1298c. The test run for autoimmune diseases didn’t find anything, but it also didn't rule out the possibility. It would test positive if I were actively having an attack but not if I were in remission between attacks. Based on current and past symptoms along with family history, I'm pretty sure I have primary Raynaud's Disease. Both of these raise my risk and likely explain why I can't carry a pregnancy to term.

I had tracked my pressures religiously second time around. This time I checked obsessively, at least 4 times a day and any time I felt off. At 22 weeks, I had a spike that sent me to L&D for monitoring. I was diagnosed with PIH at that time, since I wasn't spilling protein yet. I was devastated. I knew the average time from diagnosis to delivery was 2 weeks, and in both of my previous births I delivered within 48 hours. I really thought the best case scenario would be two micro preemies spending months in the NICU. Praise Jesus, I was very wrong about that.

I started partial bedrest--three hour-long periods lying on my left side throughout the day. Bedrest is controversial, and there isn't a lot of research supporting it, but I figured it couldn't hurt. After all, blood pressure is lower while resting, and since high pressure can damage placental arteries, keeping it low could theoretically slow the progression of PE.

I had labile (fluctuating) pressures for the next two weeks and was put on blood pressure meds at 24 weeks. We did weekly 24-hour urine tests from then until it reached 1000mg of protein, at which point it didn't really matter how much higher it got. I officially crossed the line into mild PE at 31 weeks. I went to full bedrest at that point, only up to shower and get something to eat. Bedrest with two children was difficult, but we made it work.

We managed to get two rounds of steroid shots in to help the twins' lungs mature. At 33 weeks, I started having visual disturbances. I was hospitalized for the duration of the pregnancy. When I was admitted, I was scheduled to be transferred to another hospital with a level 3 NICU, with plans to induce the following morning, but after stabilizing overnight, my OB decided to keep me local and try to buy more time. My local hospital would keep me at 34 weeks, so we scheduled the induction for that time. Then the Pediatrician said she wasn't comfortable taking on 34-weekers, and could we push for 35 weeks? So we rescheduled. Then the MFM we had been consulting with said, as long as I was still stable, why not push for 36 weeks? But everyone, OB, Ped, MFM, and most importantly Papa Runner and I agreed 36 weeks was as far as it would go.

If you want more details of my birth story, you can find them here and here. Suffice to say, I am very proud of how I advocated for myself. Even though some things happened that shouldn't have, I stood up for myself and had a wonderful, empowering birth. Both twins were born vaginally, one without pain meds, and I spent a wonderful hour in recovery nursing and bonding with my beautiful daughter and son, neither of whom were growth restricted.

But my PE story doesn't end there. Once I had been moved to a post partum room, I started throwing up. I was given a dose of Zofran and something else, but neither helped. A nurse came in to check my vitals. My BP was much higher than it had been throughout my hospitalization. When she checked my reflexes, I kicked so hard the whole bed shook. We locked eyes for a second, and I knew things were very bad.

She went out to get a second nurse, and by the time she came back I was unresponsive. However, I was not unconscious. I have very clear memories of the second nurse asking me questions (Do you know where you are? What day is it?) but being unable to respond. She also checked my vitals and then called in a third nurse who did the same. One of them got on the phone with my OB, who diagnosed me with severe post partum PE. He ordered magnesium sulfate (mag) to prevent seizures. They moved my bed back down the hall to L&D so I'd be closer to the nurses' station for monitoring. On the way, I heard one of them say I'd wake up in another room with no idea how I got there. I lost consciousness completely before we made it to the other room.

My next memory is of waking up in the middle of the night in a full blown, mag-induced hallucination/panic attack. This med is life-saving but NASTY. Again, I have very clear memories of the physical and emotional sensations I experienced, but I cannot put them into words. I couldn't call for help, so I don't know if the nurses were even aware I had been awake. I don't know how long this lasted, five minutes? An hour? But I eventually lost consciousness again.
Five Survivors
I finally awoke again in my right mind the following afternoon, 26 hours after I had first gotten sick and 28 hours after giving birth. I was very weak but finally turning around. I was able to see my babies and even nurse them for short times in the side-lying position, still too sick to sit up. By the next day, I was well enough to be taken off the mag and to get up for short periods. We were released the following day. By the end of the first week, my blood pressure was back to normal without meds.
I was able to carry my twins an amazing 14 weeks after diagnosis, and we pushed the pregnancy as far as we possibly could. I am so grateful we all survived. But after nearly dying, my husband and I were scared enough to decide we couldn't risk another pregnancy. My PE story ends here, at least as a patient. It still continues as an advocate.

Wednesday, May 16, 2012

Risk Factors Revisited

Now that we've discussed the Maternal-Fetal Conflict and seen the role of sFlt1 in the cascade of symptoms, let's take another look at risk factors. What leads to a placenta implanting poorly?

* a first pregnancy, or a first pregnancy with a new partner
While the risk of PE is around 5% for women as a whole, it's around 10% for first time mothers. Most women who get it once do not have it in subsequent pregnancies. Why?

One theory is that in a first pregnancy, a woman's body doesn't know how to react to the "foreign invasion" of the placenta, and so has a stronger immune response than needed. In subsequent pregnancies, Mom's body knows what to expect and doesn't attack as strongly. It's thought to be a similar process to desensitizing therapies done with allergies. This would fit with the increased risk in a pregnancy with a new partner. Mom was already "desensitized" to the previous father but reacts more strongly to the DNA of the new father.

Another theory is that the first placenta does a lot of work to remodel Mom's uterine arteries. Subsequent placentas can build on this work to make a deeper, better connection. One scientist describes it like a pair of pantyhose. Compare a brand new pair to one that has been worn: it's stretched out. It takes time to bounce back to normal. If Mom's immune response is just a little stronger than normal, if she had mild PE late in the pregnancy, it's a lot less likely she'll have it again, possibly due to this phenomenon.

* Age: teenagers and those over 40
Teenagers' bodies are still gearing up toward peak fertility. They aren't as prepared for pregnancy and are more likely to overreact in their immune response. On the other end, as we approach menopause, our bodies are gearing back down and are no longer as prepared to accept a placenta.

* Women who have chronic high blood pressure outside of pregnancy, including those with a predisposition for high blood pressure that has not yet shown up.
If you have high blood pressure outside of pregnancy, your risk of developing PE is 25%. If you have a predisposition for high blood pressure, the stress of pregnancy can bring it out, just like the stress of getting older or gaining weight. If your blood pressure goes up in the first trimester, it's generally assumed you have unmasked chronic hypertension rather than pregnancy-induced hypertension. The risk in this case is also 25%. It is thought, though, that the increased risk is less due to a poorly implanted placenta but rather to one that has been damaged by the higher blood pressure. This is called super-imposed preeclampsia. The cause is different, but the result is the same.

* Autoimmune disease such as lupus and rheumatoid arthritis
Having an autoimmune disease means your immune response is already more sensitive than it should be. It makes sense, then, that such women would also have a higher immune response to the placenta and would thus be more prone to PE.

* A blood clotting disorder such as Factor V Liden and MTHFR
Once again, it is thought that this risk factor might be due to super-imposed PE--the placenta may have implanted normally, but mini blood clots block off the artery connections, leading to poor nutrient transfer and the cascade of symptoms.

* A family history of PE, especially if either grandmother had it while pregnant with Mom or Dad
Research into the possibility of a genetic connection is in early stages and ongoing, but it seems very plausible that a mother with a strong limit-the-fetus gene or whose husband passes on a strong grow-a-big-fetus gene would be at greater risk.

* Carrying multiples
Do the math: more placentas=more chance of something going wrong. Also, more babies=greater demand for nutrients.

* Obesity
This may be less due to the obesity than to the tendency toward high blood pressure that often goes along with it, but improving BMI also seems to improve pregnancy outcomes as far as PE is concerned.

* personal history
After a mild case at term, the risk may be no higher than a first pregnancy (10%), but the earlier and more severely it struck, the greater the risk of recurrence. Having PE severe enough to require delivery before 36 weeks puts the risk of recurrence at 40%; before 28 weeks, 60%. Whatever issue caused PE the first time may still be in play in subsequent pregnancies. The good news is, in most cases, if PE does strike again it's likely to be milder and later.