“Can’t you just look at the monitor and tell me when to push?” I asked my nurse. “I feel like I need more data to tell me whether or not I’m getting any closer to having this baby.”

I had been pushing for more than three hours and the epidural left me with little physical data about how my contractions were progressing. After what seemed like an eternity, my nurse looked at me and said “How’s this for data?” She then picked up the intercom and announced “Delivery Room 3.” Soon a sea of medical personnel showed up to help deliver my baby.

As a scientist, I like to have information. This was especially true when I was in active labor, but my quest for data on pregnancy and childbirth actually started about a year earlier. My husband and I are both scientists, so we tend to approach things systematically and with data in hand. So when we decided it was time to start a family, I started to look for information.

If you are looking for information on having a baby, you’ll find it. More information than you could ever want—in books, on the web, from strangers on the metro — it’s everywhere. But I was looking for very specific information. What do we know about pregnancy and childbirth and von Willebrand disease?

Von Willebrand disease (VWD) is the world’s most common bleeding disorder, affecting about 1% of the population. It affects both men and women, and is hereditary. It’s not classified as a rare disease by the National Institutes of Health (NIH), but it’s rare enough that there’s not a lot of literature on it’s implications in pregnancy, which considering it’s prevalence is pretty surprising.

I was diagnosed with it at Yale-New Haven Hospital’s Hematology Center when I was just 17, after sustaining a torn meniscus from running track and subsequently having knee surgery. A few days after my surgery, my knee had to be drained of the blood that had collected there. A few days after that, it had to be drained again. My doctor looked at me and said, “in my 25 years of medicine, I’ve never seen this. You should go see a hematologist.” So after some blood work and a bleeding time test, I was told I had von Willebrand disease.  At the same time I found out I have type O+ blood, which was kind of cool to know.

Since then, I’ve had excessive bleeding every time I’ve had any kind of surgery (both when I had my wisdom teeth removed and my knee needed a second surgery). So naturally, I was concerned about how this would play out when I was expecting my first baby, since delivery does not come without physical trauma.

I set out to find what I craved: Data on how von Willebrand disease interacted with pregnancy and childbirth.

I started (of course) with the internet, where I found only incomplete data. My usual go-to for information on the disease (allaboutbleeding.com) didn’t have much on pregnancy at all. The best that I found was a scientific paper with some brief information on treating women with VWD during pregnancy.

But I still had questions. Should I take precautions during pregnancy or at the start of labor, like taking the drugs I would normally take before a surgery? What were the risks associated with childbirth? Were procedures like episiotomies and epidurals something I should avoid given my higher risk for bleeding? And what about the baby? There was a 50% chance my baby would have VWD too. Should we take special precautions for him during delivery, like avoiding forceps and vacuums?

To answer these questions, I consulted a hematologist. He seemed unconcerned, citing that for most women their von Willebrand’s factors (the blood factors that I normally have too few of) increase during pregnancy as the body prepares for labor. He then handed me the very same scientific paper that I had found online! (Did he only have the same information I had?)

Unsatisfied, I pressed him further, “What about the baby? Should I avoid using the suction device for example since that I can give the baby a hematoma?”

“They don’t use a suction device during labor,” he replied.

The female resident in the room and I politely assured him that in fact such a device is sometimes used to deliver a baby. Great. Now I wasn’t so sure if I really had nothing to worry about, or if I was dealing with a doctor who wasn’t very informed about modern childbirth.

Next on my quest for data, I went to the local support group, the Hemophilia Association of the Capital Area. There I met affected women who had given birth and talked with other doctors who frequently saw patients with bleeding disorders (many hematologists are primary oncologists, who deal with cancer patients more frequently than patients with bleeding disorders). I also switched to a new hematologist, one who could be available during my labor and delivery.

At last, I was armed with some information. If my blood factor levels looked normal (i.e. like that of someone without von Willebrand disease) in my third trimester then I wouldn’t be expected to bleed more than anyone else. But hematology would be on call and blood products would be available for me if I needed them during delivery. For consideration of the baby’s needs, the decision was that we should avoid the suction device and forceps if possible (with the latter being preferable if necessary) and that the baby should see a pediatric hematologist before he undergoes any sort of surgical procedure.

Now I felt prepared. But why had it been so hard to find the data I wanted?

As far as diseases go, von Willebrand disease was fairly common. Yet, online resources seemed limited. With few reliable sources to go to, I dug deeper looking for anything that might inform me. But searching this way runs risks. When people cannot find the reliable information sources, they are vulnerable to misinformation. In the face of uncertain situations people tend to cling to any data found, even if that data isn’t reliable, or worse, is purposefully misleading. And when it comes to medical information, misinformed people can make decisions that can have serious consequences, as the Scientific Parent has reported. There were times where I had to step back, close my JStor searches and put my computer down for my own sanity.

When my nurse gave the cue that I was about to have my baby and the room filled with medical staff, I had all the data I needed. I gave birth to a beautiful healthy baby boy on Thanksgiving Day with no major complications for me or for him.

I had a follow-up appointment with my hematologist a month later to check my blood factor levels. The results came in, and they were normal—not normal for a person with von Willebrand disease, just normal. How could this be? “Many people with blood type O”, my doctor explained, “were misdiagnosed in the past since this blood group naturally has slightly lower levels of von Willebrand factor. We now have better testing methods. You definitely don’t have von Willebrand disease.”

How’s that for data?

Update: An earlier version of this post included an image that implied that von Willebrand disease is recessive and linked to the X chromosome. Von Willebrand disease is not linked to either the x or y chromosome and is neither dominant nor recessive.

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Categories: Chronic Illnesses + Conditions, Pregnancy, Birth + Family Planning