Here’s what I gave the midwives at the Midwifery Today conference regarding clotting and pregnancy. Hopefully this will help the 1 in 20 who are not diagnosed….. I strongly recommend purchasing Vernon Katz’s audio tape on High Risk pregnancy… he talked for quite some time about clotting issues.

Clotting and Pregnancy Guide

Common sense precautions that reduce the risk of clotting for all pregnant women, diagnosed with Favor v Leiden or not.

Stay hydrated at all times. If you must be sitting for a long period of time, elevate your feet. Even a little bit can take pressure off the backs of your thighs. Get up every hour or two and stretch, walk around, get your blood moving. Eat a healthy diet with plenty of protein, B-vitamins, folic acid,magnesium and salt. Everything you do to support a healthy blood volume will reduce the risk of abnormal clotting. Get appropriate amounts of vitamin C, vitamin E and essential fatty acids. Everything you do that promotes healthy blood vessels and tissues will reduce the risk of abnormal clotting. Don’t overdo calcium. Make sure that your calcium intake is appropriately balanced with magnesium. Too much calcium can impede placental function with calcifications and increase the tendency of blood to clot. When the balance tips in favor of calcium, the balance may also tip in favor of clotting. Get enough, but not too much. Get moderate exercise every day or every other day. Ideal exercises include walking, swimming, low-impact or water aerobics, basically any low-impact exercise that gets the blood moving and the muscles contracting. Exercise improves circulation, and anything you do that improves circulation will reduce the risk of abnormal clotting.

Foods which tend to anticoagulate:

Garlic-garlic has a distinct and potent anticoagulant effect. It can be grated fresh onto macaroni and cheese or rice, made into garlic butter, added at the last minute to spaghetti sauce. Most studies around garlic used standardized tablets or capsules of standardized powder. http://onhealth.webmd.com/alternative/resource/herbs/item%2C16000.asp Ginger-More potent than garlic or onion, ginger is an effective anticoagulant. Ginger has a side benefit of promoting liver health, another great reason for women who know they’re at increased risk of preeclampsia to use it. Ginger promotes bile production and should not be used by those with gall bladder disease. http://www.herbphoto.com/education/monograph/ginger.html Purple Grape Juice-juice because the juice is made from the whole fruit, including seeds, and the seeds contain potent anticoagulants as well. Purple because much of the anticoagulant action comes from components in the skins of purple grapes. White grape juice does NOT have the same effect. Use 100% grape, not a blend or cocktail. Two cups a day were used in one study which found purple grape juice to be more effective than aspirin. http://www.pslgroup.com/dg/68BAE.htm

Herbs which act as more potent anticoagulants

Ginkgo Biloba-Ginkgo is a very potent anticoagulant. It reduces the “stickiness” of blood and improves circulation. For pregnant women it would only be advisable for those who have actually been diagnosed with a clotting disorder, and then, preferably under the guide of a Naturopathic Doctor. http://www.mothernature.com/ency/Herb/Ginkgo_Biloba.asp Ginseng-Not normally recommended for pregnancy in Western culture, Ginseng is considered fine in many Asian cultures. It is less predictable than Ginkgo, ginger, or garlic, and thus should be used with caution. It has a tendency to lower blood sugar, which may be beneficial to some, but problematic to others. http://www.healthcentral.com/PeoplesPharmacy/PharmFullText.cfm?ID=20636&stor ytype=HerbalMon

Drugs

LMWH-Low Molecular Weight Heparin is an important tool for women with active thrombosis. Less unpredictable than it’s ancestor, Unfractionated Heparin, LMWH such as Lovenox is a safer, but much more expensive treatment for clotting. It may be used in high risk women prophylactically at lower doses to prevent clotting, or at higher doses to help keep existing clots from getting worse. The jury is still out on treating all women with FVL with Lovenox. it is very expensive and may increase the risk of abruption (it may also reduce the risk of abruption in some people.) UF Heparin-Cheaper than Lovenox by far per dose, it is nonetheless more expensive from a long-term perspective due to the need for frequent lab tests and more frequent hospitalization for bleeding problems. It also requires more daily doses and is much less predictable and stable. Possible risks with heparin include placental abruption or other abnormal bleeding. Aspirin-Aspirin has not been shown to reduce miscarriage, stillbirth or preeclampsia but is commonly used for that purpose anyway. Doses must be low, higher doses can cause bleeding problems in the third trimester. There is no longer an advisement against aspirin for women in the first trimester, large-scale controlled studies have shown no teratogenic effects. Prior studies were retrospective and highly subjective in nature and most caregivers are comfortable with the common “baby aspirin per day” regimen as a;can’t hurt, might help option.

clotting connection

Common pregnancy complications which may be associated with clotting disorders Treat one, treat them all.

Miscarriage-while many miscarriages happen because of genetic abnormalities or hormonal deficiencies, some, particularly second trimester miscarriages but also first trimester ones as well, are caused by clotting in the placenta, umbilical cord or in the baby (remember that the fetus has at least a 50% chance of inheriting thrombophilia, and is also under the influence of estrogen.) Staying hydrated, eating anticoagulant foods, staying well nourished, improving blood flow, all will reduce the likelihood of a clot-related miscarriage. Stillbirth-many, many women with FVL have experienced one or more stillbirths, often as late as 36 weeks. Some of these are caused by strokes in the baby’s brain, others by increased clotting in the placenta, others by preeclampsia. Staying well-nourished, well-hydrated and active may help. Doing kick-counts is a low-tech, low-stress way of staying in touch and getting a sense of ongoing fetal well-being. Peeclampsia-preeclampsia seems to be caused by a complex interplay of blood chemistry and placental function. If you look at Metabolic Toxemia of Late Pregnancy as described by Dr. Brewer and Anne Frye, you will see a list of recommendations (hydration, nutrition, b-vitamins, magnesium, protein, salt) which by now are very familiar as also preventing abnormal clotting. Whether clotting causes preeclampsia or whether the same things that increase the tendency to clot also increase the likelihood of preeclampsia, it cannot hurt to take the simple precaution of drinking plenty of water, salting food to taste, eating lots of protein and enough calories and getting appropriate vitamins and minerals. Remember to pay attention to factors which may decrease absorption such as antacids.

FVL and Pregnancy (appeared in Midwifery Today magazine and on Themestream.com)

The Human Genome Project has seen many breakthroughs. Few are more wide reaching and relevant to childbearing women and birth professionals than the identification of a variety of genes which cause thrombophilia-abnormal blood clotting, particularly in women who are pregnant or taking birth control pills or hormone replacement therapy. How widespread? One mutation, Factor V Leiden (FVL), a single-letter-typo in the genetic code, is found in three to ten percent of people with Caucasian ancestry. In Sweden, the prevalence may be as high as ten to fifteen percent. In Italy it is as low as two percent. Another mutation, prothrombin 20210 is almost as prevalent, but is somewhat milder in effect.

People who have heterozygous (one bad gene) FVL have a three- to ten-fold risk of abnormal clotting compared to people who don’t. In normally hypercoagulable states (estrogen-containing birth control pills and pregnancy being the most common) the risks are significant. For people who have homozygous FVL (copies of the bad gene inherited from both parents) the risks of clotting are forty to 100 times the risk for someone with normal Factor V. Factor V Leiden is also known as Activated Protein C Resistance (APCR) because people who have the mutation form clots which are resistant to the normal-clot-dissolving properties of activated protein C, another blood factor.

Why is FVL so prevalent in the Caucasian population? It is likely that the mutation first occurred tens of thousands of years ago in a single individual, who passed it on to descendants. This is known as a “founder” effect. Because FVL tends to cause more problems after reproduction and with increasing age, and because it may serve a slightly protective function against postpartum hemorrhage, it may be that, like sickle cell anemia, heterozygosity for the gene may provide protection that people without the gene lack, at the price that homozygous individuals have a much increased risk of clotting. The risks are more significant now than the benefits, due to the increased use of birth control pills and the reduced risk of lethal hemorrhage in most industrialized countries.

FVL is a likely culprit if a young, otherwise healthy woman has a deep vein thrombosis or pulmonary embolism. It is not the only possible culprit, but it is the most common cause of these life-threatening conditions. Many women have this mutation and never have a problem with it. Here are some possible reasons. First of all, we know that pregnancy increases the body’s demands for B-vitamins and folic acid. Likewise, birth control pills tend to deplete the body of these vitamins. One of the things that can exacerbate FVL is high levels of homocysteine. The treatment for high levels of homocysteine is increased B-vitamin and folic acid supplementation. This may explain in part both why pregnant women and women on birth control pills are more likely to clot and why, for example, my mother had no clots during three pregnancies which occurred five or more years apart (one at age twenty, one at age twenty-six, and one at age thirty-three) but clotted excessively in her last pregnancy, which occurred just twelve months after her third, only four months after the cessation of breastfeeding. Likewise, during the time of my pulmonary embolism on birth control pills at age nineteen, my nutritional status was that of a freshman in college living on campus eating dorm food-extremely poor. Yet I got through a pregnancy with no major clotting episodes after I got prenatal care and WIC to supplement that poor diet. Certainly homocysteine is not the only culprit, but it offers a nutritional approach to reducing clotting risks in pregnancy for all women, regardless of whether they have been diagnosed with a genetic thrombophilia or not..

FVL was discovered in 1993, and awareness of it as a risk factor is just now becoming widespread. Many doctors and most midwives I’ve talked to range from barely informed to completely unaware of the condition, and as you might expect, there is no consensus on treatment protocols for various risk groups. Likewise, alternative approaches are completely experimental at present and have not been looked at seriously by those in the medical establishment who know about FVL. As the alternative community seems less than aware of FVL, most information about alternative approaches is anecdotal or conjecture. Nevertheless we must start somewhere, and as conventional treatment has significant risks, it is vital that alternative methods (specifically herbal and dietary) be examined.

Given how widespread the mutation is, it is likely that without knowing it many, if not all, doctors and midwives have had several women with FVL come through their practice. Clearly the majority of these women do not clot during pregnancy or postpartum, but the fact remains that caregivers need to be aware of the symptoms of deep vein thrombosis and pulmonary embolism, and to be aware that these often mimic normal pregnancy discomforts. Every woman I know who has had clots while pregnant or on birth control pills was misdiagnosed initially. Many of us survive this misdiagnosis, some don’t. I was told by medical professionals I had depression, the flu, asthma and bronchitis before they finally figured out I’d lost seventy-five percent of my oxygenation capacity to a pulmonary embolism. One young woman on birth control pills died after three weeks of being told that the pain in her legs was just tendonitis. The clot that finally broke lose and landed in her lung killed her within ten minutes.

As many as twenty percent of DVTs (deep vein thrombosis-clots in the large veins, usually in the legs) have no symptoms, and DVT is notoriously hard to diagnose. Symptoms may be limited simply to pain in the leg, or they may be as noticeable as swelling, hotness, inflammation or pain radiating from low in the leg to high in the leg. DVT’s are very serious as clots can break off and go to the lungs. Diagnosis is usually done with ultrasound of the veins or radiography. Pulmonary embolism may cause a stabbing, specific, non-radiating pain in the chest which does not go away, or it may simply cause shortness of breath and a “bruised” feeling when someone takes a deep breath. Diagnosis is usually confirmed by a VQ lung scan (radioactive dye is injected, then observed) and/or an angiogram. Treatment for either is usually low-molecular-weight heparin. Non-pregnant patients with massive embolism or thrombosis may be treated with streptokinase, tPA, or another thrombolytic (clot-busting) drug, followed by anticoagulation with Coumadin or heparin. Surgery to remove large clots may also be necessary.

Coumadin is contraindicated in pregnancy; current standard-of-practice is to treat pregnant women with therapeutic levels of heparin if they have a clot during pregnancy.

There is no consensus on what the treatment protocols should be for FVL women who do not currently have clots. For women who have clotted in the past (particularly those who have clotted while on birth control pills or during past pregnancies), some caregivers prefer therapeutic levels of heparin, others prefer prophylactic (lower dose) heparin. Some women may decline either protocol and prefer low-dose aspirin therapy or dietary measures or both. For women who have never clotted, many medical model care providers prefer low-dose heparin, but some will simply advise low-dose aspirin and clot-prevention physiologic approaches, with heparin only if the mom goes on bedrest or has a c-section or otherwise increases her risk of clotting.

Dietary approaches deserve consideration. A combination of B-vitamins and folic acid to lower homocysteine levels, with anticoagulant foods such as garlic and grape juice as well as herbs such as ginger and gingko biloba may serve to adequately anticoagulate a lower risk FVL woman without greatly increasing her risk of hemorrhage. As long-term heparin therapy has some risk of osteoporosis and greater risk of pathological bleeding, it is important to find ways to minimize risk of treatment while also minimizing risk of disease. A well-nourished mother who takes care to avoid sitting for long periods of time, avoids crossing her legs, exercises in moderation but with great frequency and takes measures to reduce stress in her life (stress depletes B-vitamins!) is not at a huge risk for clotting even if she does have heterozygous FVL. A stressed out mom with a less-than-ideal diet who works sitting or standing for eight hours per day and then spends an hour on her feet shopping after work and eating fast food twice a day is at a much greater risk.

Another factor which caregivers need to be aware of: Women with FVL have an increased risk of repeat miscarriage, miscarriage later in pregnancy, and stillbirth than women who do not have FVL. Anticoagulation may dramatically improve the odds of carrying a pregnancy to term in someone who has had repeat miscarriages and has FVL. FVL may also be a causative factor in preeclampsia. Here again, red flags came up for me in my research on the nutritional aspects. We know that poor nutrition can pre-dispose a woman to metabolic toxemia of late pregnancy. (See the book by the same name by Dr. Tom Brewer, and Anne Frye’s Understanding Diagnostic Tests in the Childbearing Year.) Tom Brewer’s diet is very high in b-vitamins and protein. By helping to lower homocysteine levels and not exacerbating the problem of activated protein C resistance with depleted protein levels, could such a diet also help women with FVL?

The current medical protocols for women with a history of thrombosis are grim, contradictory, and illogical. Women tend to be treated prophylactically with heparin, which increases the risk of hemorrhage if it is not discontinued before birth. Because of this, caregivers take women off heparin and then induce them, so that the time off of heparin can be “better controlled.” Induction usually means reduced mobility, IV’s and constant fetal monitoring, and there is a definite risk to the baby of prematurity since most such inductions are done at 39 weeks (or 37 weeks if the caregiver is jumpy about the increased estrogen levels in pregnancy and “just wants her pregnancy over.” This raises the grim specter of women who are vigorously encouraged to get abortions and get sterilized if they clot in pregnancy.) Right about the time that anticoagulation is ceased, the woman is made less mobile, which increases the risk of clotting further, and the risk of c-section. This brings us to the biggest risk a woman with FVL faces.

The number one cause of death as a result of cesarean section is pulmonary embolism. All surgery and hospitalization increases the risk of clotting, but the risk for someone with FVL is substantially greater than for the general population. The best ways to avoid a c-section: 1. Avoid early induction. 2. Avoid constant electronic fetal monitoring. 3. Avoid pain medication. 4. Have a midwife provide care in labor and birth. Statistically the best chance of avoiding c-section is to have a homebirth with a midwife, next a birth center birth, then hospital birth with a midwife. Prior thrombosis, however, is an automatic risk-out criteria for most midwives and birth centers. This is one of the best arguments I’ve ever seen against blanket risk-out protocols. Clearly in this situation the mother might be best served by caregivers working in collaboration, direct-entry midwives and/or CNMs working together with hematologists and perinatologists to allow women with FVL to birth at home or in low-intervention, low-tech settings. Prophylactic heparin need not be a contraindication to homebirth if the midwife has the knowledge, equipment and backup she would need to deal with a precipitous birth in a heparinized woman. There is also the completely neglected question of whether vitamin K should be administered to babies of women who have FVL. These babies often have FVL themselves and have elevated levels of estrogen from the mother’s pregnancy. Does vitamin K put them at risk for abnormal clotting? No one seems to know.

I am a twenty-eight-year-old woman with heterozygous Factor V Leiden who had one clot while on birth control pills at the age of nineteen. I had a healthy, normal pregnancy with my daughter a year and a half later–the only problems were related to my fear of clotting. I did not take heparin during my pregnancy; instead I ate garlic and ginger and drank purple grape juice daily. I was careful and aware and didn’t sit with my feet dangling. I may have another child some day. I want to have a healthy, normal pregnancy again, and a homebirth. Will I be able to find caregivers who have enough respect for my understanding of the issues not to force my hospitalization at term? Will I be able to find a midwife willing to risk her professional status by “violating” her protocols to treat me? The unassisted homebirth movement looks more and more appealing when I look at the options for prenatal and birth care for someone in my situation. Perhaps I am fortunate that I am currently single and celibate and don’t have to face this issue at the present time.

My daughter has FVL and may never have a clot because we know how to be careful. In twenty years she may decide to have a baby. Will she be able to find a caregiver who will allow her to birth unhindered?

Jennifer Rosenberg, CD(DONA) is Midwifery Today’s graphic designer and was diagnosed with heterozygous FVL this winter along with her mother and daughter. Her mother has been clot-free since 1986; Jennifer has been clot-free since 1992.

References and Resources 1)Zivelin, A, Rosenberg, N, et al. (1998). A single genetic origin for the common prothrombotic G20210A polymorphism in the prothrombin gene. Blood, 92:1119.

2)http://www.mgwater.com/estrogen.html

3)http://www.nejm.org/content/1998/0338/0015/1009.asp

4)http://www.epi.bris.ac.uk/rd/publicat/dec/dec58.htm (link no longer works but information is useful: A discussion of the merits of screening for Factor V Leiden in oral contraceptives users. Gives detailed descriptions of testing methods and reasons why screening may or may not be useful.;Estimates suggest that there are 5 cases of venous thrombosis per 100,000 women not using oral contraceptives per annum, 15 per 100,000 women users of second generation oral contraceptives and 30 per 100,000 users of third generation oral contraceptives, and 60 per 100,000 pregnancies. This superb article describes very realistically the shortcomings of testing.).

http://www.geneclinics.org/profiles/factor-v-leiden/ A superb overview of the risks and research.

http://www.gth-online.de/thrombo/Abstract/p182.htm Describes some of the differences in risk factors for clotting.

http://www.medstudents.com.br/medint/medint4.htm, http://www.medstudents.com.br/medint/medint5.htm Gives a rundown on risk factors. The second page gives testing and treatment options.

Other resources: http://www.fvleiden.org has information and a mailing list. http://www.onelist.com/community/FVL-PG is an egroups mailing list for pregnancy and FVL. This is a gathering point for women who are pregnant, many of the women on the list have lost one or more babies due to complications of FVL.