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.