Understanding Miscarriage and Recurrent Pregnancy Loss 

It’s not your fault.

Too often, when a woman suffers a pregnancy loss, she feels not only soul-gripping grief, but the fear and self-loathing that she made it happen. Carrying that heavy package…her stressful job…the ski trip.

Please don’t do that to yourself, say doctors and loss-support advocates. Women need to grieve how they need to, but should try not to blame themselves. And try to remember that there’s hope, because the large majority of women who have dealt with pregnancy loss go on to have healthy children.

Knowledge Is Power 

Demystifying pregnancy loss—from understanding terms, reproduction basics, and what can be done about it to learning positive self-care—helps couples to cope with grief and to empower them to keep trying.

At a basic level, the terms used to describe the loss can influence how women and couples and people around them deal with it. People may hear or read a variety of words that can be confusing, or even have painful connotations. “Miscarriage” usually refers to pregnancy loss before 20 weeks, but is sometimes used more broadly. Sometimes the term “spontaneous abortion” is used by doctors for early-stage loss, which horrifies some patients. “Stillbirth” is usually the term for a loss in the third trimester.

Dr. Zev Williams is among some doctors who are trying to move away from “loaded” references. Williams is the Director of the Reproductive Endocrinology & Infertility Division and Associate Professor of the Obstetrics and Gynecology Department at Columbia University Medical Center.

He says: “With ‘miscarriage,’ in particular, there’s a legacy of this term and patients understand it, but it’s not ideal because it implies that the pregnancy was miss-carried, that the woman might have done something wrong. ‘Pregnancy loss’ is more commonly used now because it refers to demise of the [pregnancy] at any point and it happens on its own. It’s non-judgmental.”

Loss Happens More Often Than People Think 

A key part of dealing with pregnancy loss can be in understanding that it’s pretty normal. That doesn’t make it hurt less, but it clarifies to someone trying to have a child that she is not alone. Williams says that one in five [clinical] pregnancies ends in loss. Counting biochemical losses, experts say, that that ratio increases to one in four. One in four women you know may have had a loss experience.

A key part of dealing with pregnancy loss can be in understanding that it’s pretty normal. That doesn’t make it hurt less, but it clarifies to someone trying to have a child that she is not alone.

A biochemical pregnancy is when a blood or urine test shows positive signs of pregnancy but there’s no ultrasound or tissue evidence. It’s hard for couples not to get excited but doctors say that loss in the early stages, in particular, is very common.

Dr. Lora Shahine says, “Human  reproduction is extremely inefficient.” She is the director of the Recurrent Pregnancy Loss Program at Pacific Northwest Fertility in Seattle, Washington, and author of Not Broken: An Approachable Guide to Miscarriage and Recurrent Pregnancy Loss. “In our society, we want results and we want them now. But we have to remain honest about the process  and how much we still need to learn about reproduction and miscarriage. Miscarriage is very common.”

Shahine says that although at-home pregnancy tests are a very positive advancement, before they existed, many women would have had egg fertilization or very early-stage fetus development but would have lost it before it could be diagnosed. They wouldn’t have known that they were pregnant, and wouldn’t have experienced that hope–grief cycle that many do now.

Dr. Williams agrees: “So often, women think they’re losing a normal pregnancy, but in fact they’re losing a pregnancy that was not sustainable. This is the natural process of the reproductive system stopping the development of a fertilized egg due to chromosomal abnormalities.” Usually, it means that the embryo received the wrong number of chromosomes.

Recurrent Pregnancy Loss 

Some women can get pregnant, even easily, but cannot maintain the pregnancy.

In 2013 the American Society of Reproductive Medicine made a major decision to define recurrent pregnancy loss (RPL) as a disease in which a woman has two or more clinical pregnancy losses. From this came more clarity for patients and doctors that RPL was a real syndrome requiring further, specific investigation.

According to a recent study in the International Journal for Women’s Health 2% to 5% of women will experience RPL.

That seems like a small number, thankfully, but when it happens, it is devastating. Williams says: “We see women who are suffering losses over and over. It’s a very emotional situation, especially because often no cause was found.” More than 50% of RPL occurrences are diagnosed as “unexplained.”

When a woman has two or more pregnancy losses she should talk to her doctor about exploring the causes more closely. Shahine says that if a doctor is unwilling or unable to address a patient’s questions and concerns, she should find a doctor who will support her and do the testing.

Testing after Recurrent Pregnancy Loss 

Here are the main treatable issues that Williams and Shahine say most clinicians look for in an exploratory workup and how they are discovered:

• Anatomical: A physical exam and imaging to examine the woman’s uterus for structural abnormalities in shape or in the form of polyps or fibroids.
• Hormonal: Blood tests to look for thyroid dysfunction, prediabetes/diabetes, and high prolactin levels (which negatively affects progesterone levels).
• Genetic: “Karyotype” blood work looking for chromosomal abnormalities in the parents such as Tay Sach’s disease.
• Antiphospholipid Syndrome: A blood test could determine if the mother has this hyper-clotting condition.
• Medical/Surgical: A medical history review, blood work is done looking for conditions such as celiac disease.
• Environmental: A medical history review for complications due to factors such as obesity, smoking, or alcohol or drug use.

There may also be fetal tissue examination to pinpoint chromosomal abnormalities.

According to Williams, “I have had patients who have had 15 to 20 pregnancy losses but they keep trying. Our practice often sees the more complicated cases. If they go through the complete workup and no cause is found, we can do some advanced testing that is not standard yet but may find a cause. We may also treat them with Neupogen, which boosts the immune system. Although it doesn’t work in all unexplained cases, this is the only immunological treatment for women trying to conceive that has been proved to work by randomized, double-blind, controlled studies.”

Trying Again  

How long should patients wait before trying to conceive again?

Shahine says: “In general, in uncomplicated, first-trimester miscarriages, a couple can try again after the first menstrual cycle after the loss. In later pregnancy loss, the provider may recommend waiting more than one cycle.”

Williams is even more specific: “We recommend that the pregnancy hormone [beta HCG] be ‘followed to 0’ (or to the negative, usually <5), and that the uterine lining return to normal. Then the woman can try to conceive again. The timing of this depends on a number of factors, but is typically between one to three months.” Hormone testing frequency depends on the clinical situation, but is typically weekly.

Sharing Stories of Pregnancy and Loss 

When couples are in early stages of pregnancy, and especially after suffering a loss, they often keep the secret to themselves.

Tara Shafer, a writer and cofounder of Reconceiving Loss, an online support outlet and public forum for people coping with pregnancy loss says: “Women trying to conceive and their partners often keep silent about the pregnancy until that commonly held 20-week marker. But keeping silent about the pregnancy and then about the pregnancy loss can be excruciating. How can you really grieve in a healthy way if you’re not sharing with friends and loved ones?”

In July 2015, Mark Zuckerberg’s Facebook post about the miscarriages he and his wife Priscilla Chan dealt with, was a significant step in helping to remove the stigma from sharing this difficulty publicly. (It has received 1.7 million responses.) There are also a growing number of forums for people to share their story from local support groups to websites to social media hashtags.

Shahine also wants to break the stigma of silence. She wants women to talk about their pregnancies if they feel comfortable with it, so that if there is a loss, they don’t have to hide their grief, and changes in mood or behavior will make sense. Their support systems can be there for them.

Taking Care of Emotional Wellness 

Shafer, who lost a pregnancy at 33 weeks with her second child, suggests that women talk to loved ones, find support groups and pursue whatever seems to bring healing.

Shafer states, “When I was dealing with my own loss (in 2005), I started to do meditation, yoga…I realized that things I wasn’t aware of before, I was now open to. Anything that could possibly make me feel better I was open to.”

She suggests that men or partners do the same. “They are suffering loss as well, even if not physically. They should be supported in their own grief and seek guidance on how to support the conceiving partner who has that tremendous weight of physical, emotional, and psychological loss.”

Even with all that is unknown about pregnancy loss, statistics favor hope.

Shahine says: “Even if someone has a miscarriage, the vast majority of women will go on to have a successful pregnancy 60% to 80% of the time.”

In fact, Shafer was treated for a blood clotting disorder and went on to have two more healthy children.

What Can People Say or Do for Support? 

Shafer says: “If a person shares the loss with you, simply say, ‘I’m so sorry.’ Avoid: ‘Let me know if I can do anything,’ which puts a burden on the woman. Be specific, such as: ‘Could I make you dinner? Could I help pick up your child from school?’ Sometimes I don’t reach out directly to someone suffering with a loss but I write a card saying: ‘I’m thinking of you.’

She adds: “Avoid advice. Grieving parents want assurance that they can make it to the other side of grief. That path to the other side may be different for everyone.”