The Expectant Parent’s Guerrilla Guide to Preeclampsia

c-sectionTrust me on this one: You do not want to first learn about preeclampsia the night your wife is diagnosed with a severe case of it, resulting in an emergency Caesarian delivery of your child.

I learned this lesson the hard way. Here’s what happened. In January, my wife and I learned that she was pregnant. This was something of a surprise, because we had been unable to get pregnant for years. What I think happened is that my wife’s fibroid embolization procedure in 2012 cleared a blockage (perhaps of the fallopian tubes), eventually allowing the pregnancy. We signed up at Mountain Midwifery near Denver, went to classes there, and planned on a normal delivery around August 15.

That’s not how things turned out. We went in to the Midwifery on July 10, and attendants there got high blood pressure readings for my wife of 163/96. This was a surprise, as my wife had not previously had trouble with high blood pressure. I didn’t know what was going on, and I had no idea how to gauge the seriousness of the reading. An attendant also tested my wife’s urine, and it showed high protein counts—an indication of possible kidney problems.

The Midwifery sent us to Swedish Hospital. The Midwifery’s relationship with Swedish to handle emergencies is a major reason why we chose the Midwifery. The thinking is that, for most cases of child delivery, you don’t need the intensive medical intervention of a hospital setting, but, in a small fraction of cases, you really do want access to all the technology and expertise that Western medicine offers. We turned out to be in the minority.

We saw a doctor at Swedish, and she confirmed that my wife had high blood pressure. She ordered an ultrasound to check the health of the fetus; thankfully, he was fine. She also rechecked my wife’s urine, and again found elevated protein.

My wife had preeclampsia. At the time, I had no idea what that meant. One thing I soon learned is that there are mild and severe forms of it. At first it was not clear where we were on that spectrum. At first, the doctors thought they might be able to send us home with some medications and deliver in a couple weeks. But, after my wife’s blood pressure did not respond well to medication, we heard the diagnosis of severe preeclampsia. That narrowed our options to inducing delivery right away or going in for a C-section. We started the induction process, but then, when a doctor found the fetus was breech (head up), we started prepping for a C-section.

One thing I appreciate about the staff at Swedish is that they gave us the information and the space to make an informed decision. Going in for a C-section was not an easy option to face, especially given that my wife had read extensively on traditional vaginal birth and was committed to that path. When I asked the staff to give us a few minutes to absorb the information and discuss our options, they gave us the space we needed.

The decision came down to two main facts. First, my wife’s preeclampsia was not going to improve, and was likely to get worse, until she delivered the baby. Second, the baby was breech, meaning that a vaginal birth was unlikely anyway. Everyone at Swedish was on board with the C-section, and so was our primary care doctor (with whom I was able to speak by phone). That wasn’t the path we had planned or thought much about, but, we soon realized, it was the medically optimal path for us given the circumstances. We both felt that we were making an informed decision and that we remained actively in control of our health. I will always be grateful to the staff at Swedish for giving us the information and time we needed to reach the conclusion on our own, rather than trying to push us into the procedure before we understood the relevant issues and had the time to absorb the emotional shock.

We went in for the C-section around two in the morning of July 11. My wife remained awake, and I could observe both sides of the sheet: my wife’s face and the doctors at work. Watching the C-section was another shock for me. What I had imagined is a doctor gently slicing open the belly, then reaching in with fingertips and gently pulling the baby out. But “gentle” is just not a word that applies to a C-section. I tried hard to conceal my shock so my wife couldn’t see it on my face.

The process was much more—shall we say active—than I had imagined. The main surgeon and her assistant forcefully cut through the belly, then the uterus, then pulled out the baby a limb at a time. At one point, it seemed that the surgeon’s whole arms disappeared into my wife’s belly. I thought for sure the baby would end up with broken bones (of course he didn’t, although he did have some bruising). I vividly remember my baby with his entire body out of the womb except for his head, which remained stuck inside. It was quite a process just to get the head out. Of course, during this process tubes sucked away the blood and amniotic fluid.

Child Birth Swedish HospitalFinally, baby delivered, the doctors stitched back together my wife’s uterus—as it sat atop her belly. “Is that normal?” I asked; I was assured it is. I even saw a couple of fibroids left from the embolization procedure. One larger fibroid was on the bottom of the uterus, which might have made a normal vaginal birth difficult or impossible, even had my wife not had preeclampsia.

I’ll pause here to praise the lead surgeon, Susan Peck. Her work during the surgery, as well as her interactions with us before and after the surgery, were outstanding. I’m convinced she shaved several weeks off my wife’s recovery time with her skillful work. “Beautiful” is sort of an odd word to refer to a surgical scar, but it is in fact beautiful as a mark of excellent work, and several staff members at Swedish used the term in that context, as did I.

My son owes his life largely to two doctors: Brooke Spencer, who performed the embolization procedure and thereby made his conception possible, and Susan Peck, who performed the C-section and thereby made his delivery possible.

The delivery finally over, my wife went to recovery while my son went to the NICU (Neonatal Intensive Care Unit). I spent the rest of the night wandering between my wife’s room and the baby’s room.

So what is preeclampsia? Please note that I am not a doctor or health professional of any kind, so nothing I discuss here is intended as medical advice. As far as I can tell, no one really knows what causes preeclampsia. They do know how to treat it, thankfully.

“Eclampsia” refers to seizures during pregnancy. So a preeclamptic woman is one at risk of suffering seizures or stroke. Here’s a summary from the Preeclampsia Foundation:

Preeclampsia is a disorder that occurs only during pregnancy and the postpartum period and affects both the mother and the unborn baby. Affecting at least 5-8% of all pregnancies, it is a rapidly progressive condition characterized by high blood pressure and the presence of protein in the urine. Swelling, sudden weight gain, headaches and changes in vision are important symptoms; however, some women with rapidly advancing disease report few symptoms. . . .

Globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death. By conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year.

Notably, my wife showed no external symptoms of the disease. But for the blood pressure test and subsequent tests for her kidneys and liver, we would not have known she was preeclamptic. That’s horrifying in retrospect, because I don’t know how long my wife had the problem (her previous blood pressure check was three weeks prior), and I imagine what might have happened had we not caught the disease when we did.

As Mayo points out, the precise causes of preeclampsia are unclear. One theory I heard is that the genetics of the placenta (and possibly the fetus) somehow trigger an autoimmune response (or something similar) in the woman.

The cure for preeclampsia is to give birth. However, as I learned, the “cure” can take some time to take hold. Doctors put my wife on a twenty-four hour magnesium drip soon after delivery to protect her from stroke and seizure. With the drip and with blood pressure medications, finally they got my wife’s blood pressure under control. However, once she went off the drip, we had another scary night with high blood pressure readings, so doctors put her back on the drip and increased the dosages of her other meds.

In all, we spent eight days in the hospital, a grueling slog that felt like it would never end. (Note to hospital equipment designers: Please stop making every single last piece of equipment beep unnecessarily and incessantly.)  Apparently, such severe residual preeclamptic symptoms are fairly rare in patients, so our doctors struggled a bit to get the meds right.

My wife continued to take blood pressure medication for another three weeks at home, until finally her readings returned to normal.

While my wife recovered from preeclampsia, my son developed in the NICU. The nurses there are excellent, and they helped train me to feed and care for my son.

We were delighted to learn that, thanks to the Mother’s Milk Bank, our son would be able to drink donated breast milk until my wife’s milk came in. This was a huge relief, as I was slightly horrified the last time I read the ingredients list of formula. I was so grateful that our son could have the best available nutrition.

At 35 weeks, our son was a premie but a relatively developed one. Some babies in the unit were far younger. Our son needed a feeding tube at first, in addition to pressurized air to help him breath. He also got the “hot box” and the jaundice light for a few days.

Our son spent ten days in the NICU, two days longer than my wife spent in the hospital. We were thankful to get everyone home, yet I was also grateful that we could stay at the hospital when we needed to. In general, we were extremely happy with Swedish from the moment we walked in the door until, finally, we drove away.

I had spent all my time planning for a “normal” vaginal birth in mid-August, so an emergency Caesarian delivery in early July was a difficult thing to adjust to. The time in the hospital was extremely stressful and exhausting. And we were in the middle of some major home projects—I thought I still had five more weeks—so coming home was not the restful and serene experience I had envisioned. But we made it through fine, and the results are excellent. We didn’t take quite the path we had planned, but we arrived at the same destination; ours is a success story.

So what are some of the take-home lessons for other expectant parents?

1. Learn the basics about preeclampsia early in pregnancy, so you are better equipped to handle it if it happens to you.

2. Plan for a “normal” delivery—I highly recommend the Mountain Midwifery if you’re in the Denver area—but have a contingency plan in case something goes wrong. The Midwifery’s contingency plan is to send patients with complications to Swedish, and, for us, that worked spectacularly well.

3. If you’re pregnant, consider buying a home blood pressure kit and taking your pressure every day or two. One doctor advised us to sit still for five minutes and have your arm level with your heart to take a pressure reading. If I had it to do over again, I’d take regular home readings to supplement doctors’ readings. That way, I’d have a better ability to notice sudden changes and promptly seek professional guidance if needed.

4. If you do end up with severe preeclampsia, take heart that modern doctors know how to handle it. You want to take the disease seriously, but there’s no need to worry excessively about it, given the technologies and expertise of modern medicine.

5. Be prepared for contingencies. Get your “to go” bag ready early on. Include earplugs and eye shades, as sleeping in a hospital can be challenging. Get your house in order early if you can. Line up someone to watch your house and your pets if necessary.

6. Prep yourself for the potential stresses of a hospital visit. During the first night at the hospital, I did not sleep a wink, so I started the process utterly exhausted. It was a very busy and stressful time.

7. Be an advocate for yourself or your patient while respecting the time and expertise of hospital staff. Generally, we had very positive interactions with everyone at Swedish—something made easier because Swedish is an excellent hospital. However, I had a couple of unnecessarily testy exchanges with doctors, largely because I was tired and stressed; I later apologized to those doctors and we resumed a good working relationship.

8. Do what you can to get mother with baby, but recognize the limitations of the hospital setting. At first, I did not understand why baby could not be in the same room as mother. Then it became apparent to me: The NICU is very specialized, as is the Labor and Delivery ward, so sometimes it’s not feasible to keep mother and baby together. That said, do try to facilitate meetings of mom and baby until they can get into the same room or come home.

To me, preeclampsia was terrifying. But largely that’s because I didn’t know what it is or how doctors treat it. If you’re an expectant parent, do yourself a favor and spend a bit of time reading about the disease and preparing for the possibility of going through it. Then you can take comfort in the knowledge that most pregnant women don’t get preeclampsia, and, if a pregnant woman does get it, doctors are in a great position to effectively treat it. Preeclampsia is a problem for some women, but a manageable one with modern medicine.

Related:

William Coley’s Immune-Provoking Cancer Treatments

Image: Wikimedia Commons
Image: Wikimedia Commons

William Coley, a doctor in the late 1800s and early 1900s, noticed that some people who got infections beat their cancer. As I understand his work, he theorized that an infection boosts the body’s immune system, which then also (sometimes) fights off cancer. Coley developed some bacterial vaccines and gave them to patients, not to vaccinate against a particular illness, but to basically trick the immune system into going into high gear.

Today Coley is not well-respected by other cancer researchers, and his vaccines are illegal in the United States. But Monica Hughes thinks Coley vaccines are a very good ways to treat some cancers, and her husband has taken them (in conjunction with other treatments) to treat a brain tumor. Apparently the treatments have met with at least some success. I’m not sure what to think of Coley’s work, but I do find it interesting, regardless of whether ultimately there’s anything substantive to it.

In June, Hughes presented her views at a Liberty On the Rocks event in Broomfield. Please observe the disclaimer posted with the video: “The speaker is not a medical doctor or health care practitioner. The ideas in this video are not intended as a substitute for the advice of a trained health professional. All matters regarding your health require medical supervision. Consult your physician and/or health care professional before adopting any nutritional, exercise, or medical protocol, as well as about any condition that may require diagnosis or medical attention. In addition, statements regarding certain products and services represent the views of the speaker alone and do not constitute a recommendation or endorsement or any product or service.”

My Wife’s Experiences with Uterine Fibroid Embolization

I never heard of fibroids until I learned early last year that my wife Jennifer had them. (Her mother had them as well, as did an aunt and a grandmother, so I think they’re at least partly genetic.) Fibroids of the uterus are what they sound like: Fibrous masses—noncancerous tumors—growing in the uterus. My wife had a lot of them, some of them quite large (up to six centimeters across).

Fibroids can do a variety of nasty things, such as interfere with pregnancy and cause heavy bleeding. My wife had severe anemia (for which she took iron pills), and she ended up in the emergency room once due to bleeding, which prompted us to get more serious about solving the problem.

The first OBGYN we visited (before the ER visit) wanted to cut out my wife’s uterus—do a hysterectomy—which struck me as an absurdly disproportionate “solution” relative to the problem. A hysterectomy would have required a six-week recovery, and obviously it would have made pregnancy impossible.

The second doctor my wife visited is an endocrinologist. He wanted to cut out the fibroids laparoscopically, through small slits in the abdomen. This was a considerably less-horrible alternative, but the problems were two-fold: a long recovery time and a high probability of regrown fibroids within a few years.

There is a lesson here: Don’t necessarily act on the first “expert” advice you hear from a doctor (or anyone else). The first doctor my wife saw gave her terrible advice. I chalk this up to the “hammer and nail” phenomenon: The first doctor happened to do hysterectomies, so that’s what she thought my wife needed. The second doctor happened to do laparoscopic surgery, so that’s what he thought my wife needed. In fact, she needed neither of those procedures.

Thankfully, we kept digging, and we learned about embolization. The idea is that a doctor runs a tube up through the main artery in your leg up to the uterus. Then the doctor strategically releases silicon particles to block or restrict the blood flow to the fibroids. Assuming this goes well, the fibroids shrink and are absorbed by or discharged from the body.

Jennifer learned that RIA Endovascular performs uterine fibroid embolization (UFE) in Denver. Checking around, we heard that RIA’s Dr. Brooke Spencer was excellent in the field. And she is.

After a consultation and a preliminary MRI, Jennifer had the UFE procedure done by Spencer on September 6 of last year. At the six month mark she got a second MRI, and the results are very good, with some fibroids completely gone and most others significantly smaller. (The remaining fibroids are expected to continue to shrink.) Her monthly bleeding and cramping is radically less now than it was before, and her anemia is gone.

We were extremely happy with Spencer’s work and with her willingness to answer our questions in minute detail. Indeed, we were very happy with the service provided by everyone associated with RIA. Likewise, we were happy with the service provided at Littleton Medical Center, where the procedure and recovery took place.

We did have a slight hitch in the recovery. The hospital staff put Jennifer on a morphine-class drug (I believe synthetic) immediately after surgery, but the next day when they took her off of that drug and switched her nausea medication she experienced some abdominal pain and some violent vomiting. They put her back on the morphine-class drug, changed her nausea medication, and kept her a second night. So UFE is definitely not an out-patient procedure, but Jennifer was back to work five days later.

Obviously neither Jennifer nor I are doctors, so anyone reading this should consult with a qualified medical expert regarding any medical issue. That said, in our case, we’re extremely glad we pursued UFE, particularly through RIA. So thank you Dr. Spencer and team!

July 7, 2016 Update: Last year my wife gave birth! It is my belief, although not a certainty, that the fibroid embolization allowed her to get pregnant. The procedure did not seem to interfere with the pregnancy. She did deliver early due to severe preeclampsia. Because she had a c-section, I actually saw her uterus. She still had some remaining fibroids, including one that might have interfered with baby positioning and delivery; but we still regard the embolization as an overwhelming success.