Four years ago, I miscarried at 12 weeks. I sat in my OB’s office insisting this loss wasn’t nature’s way of handling an unviable arrangement of chromosomes. Citing my nagging intuition, I asked to be tested for autoimmune disorders, which I’d read could cause miscarriage. My OB kindly and patiently convinced me doing the necessary blood work would waste time and money. She saw no evidence to indicate that my miscarriage was anything out of the ordinary.
But the evidence showed up in spades when I got pregnant again several months later; my routine syphilis test came back positive. A more sophisticated blood panel confirmed the obvious: I did not have a venereal disease. What I did have, however, were unusually high levels of antinuclear antibodies, which can cause a false positive syphilis result. After I underwent more lab work, I learned I had Antiphospholipid Antibody Syndrome (APS), an obscure, enigmatic autoimmune condition that more often affects women, many of whom don’t even know they have it until their pregnancies go awry. Only 8 weeks along, I was classified as a high-risk obstetric patient and began anticoagulant therapy to keep from miscarrying again.
What is Antiphospholipid Antibody Syndrome?
So what is this little-known culprit with a fancy name? In simplest terms, APS is an autoimmune disorder in which the body doesn’t recognize parts of its own cells and creates antibodies to attack them. According to Dr. Victoria A. Seligman, a rheumatology fellow at the University of California, San Francisco, APS is diagnosed when a patient has one or more of the following criteria:
- Positive antibodies test (includes lupus anticoagulant antibody, anticardiolipin antibody, and false positive syphilis screen) on two separate occasions, at least 8 weeks apart;
- Recurrent fetal loss
- Low platelet count
- Clotting events
Seligman stresses that not every woman who tests positive for the antibodies has APS. An estimated 2 to 5 percent of women have elevated antibody levels, but only 10 to 20 percent of this group have problems in pregnancy. For those in the high-risk category, possible pregnancy risks include:
- Clotting events, also postpartum
- Prematurity and intrauterine growth retardation (IUGR)
Anticoagulant Therapy During Pregnancy
When a woman with undiagnosed, untreated APS gets pregnant, her body may begin to reject the fetus. Antibodies form tiny blood clots that enter the placenta and shut off the supply of oxygen and nutrients to the baby, resulting in miscarriage. Although doctors used to wait to diagnose APS until a woman had three consecutive pregnancy losses, many OBs now try to prevent this needless suffering by testing a patient after one or two losses.
Roberta Montgomery of Los Angeles had a normal pregnancy with her son, Roland, now 2 years old. But her second pregnancy ended at 11 weeks after a previous ultrasound had shown a healthy fetal heartbeat. Thinking this an unusual development, Roberta’s astute OB checked her for APS and found she had moderate levels of antiphospholipid antibodies. Because Roberta wanted to get pregnant again, her OB sent her to Dr. Hal Danzer, a Beverly Hills fertility specialist. Dr. Danzer prescribed two blood thinners — baby aspirin and heparin — to prevent clots. Both medications are considered safe during pregnancy and heparin has proven extremely beneficial in combating miscarriage and intrauterine growth retardation.
Under Danzer’s supervision, Roberta learned to give herself heparin shots in the stomach twice a day while she was trying to conceive to facilitate implantation. When she got pregnant — fortunately, after just a couple of months — she maintained the heparin therapy until the end of her second trimester. Her placenta and amniotic fluid were in good condition and the fetus was growing normally — all signs that the heparin was indeed keeping clots from forming. With Danzer’s permission, Roberta stopped the heparin shots at the beginning of her third trimester and continued taking a daily baby aspirin for the duration of her pregnancy. Although he arrived 2 weeks early, Roberta’s second son Bobby, now 5 months, weighed in at a strapping 8 pounds, 11 ounces.
Not every woman with APS needs to take heparin during pregnancy. After miscarrying at 16 weeks, Kathy Hennessy of Greenville, South Carolina learned she had low levels of antiphospholipid antibodies. Because her condition was borderline, she required only baby aspirin during her second pregnancy.
Daughter Emma Gwynne, now 17 months, was born safely one week late weighing 9 pounds, 7 ounces.
In addition to anticoagulant therapy, APS mothers commonly undergo more fetal monitoring than women with low-risk pregnancies do. Roberta Montgomery, Kathy Hennessy and I had many extensive ultrasounds to track the condition of our placentas and amniotic fluid, as well as our babies’ measurements. Roberta had two sonograms until 34 weeks, and then one a week until she delivered Bobby. Kathy’s eleven ultrasounds of Emma Gwynne fill an entire videotape.
Because I had high levels of antibodies, I had up to two ultrasounds plus fetal heart monitoring every week from 26 weeks until 37 weeks, when I gave birth to my son, Jack, who weighed 6 pounds, 5 ounces. In fact, I spent so much time at my doctor’s office that my OB, her staff and I joked that I should just rent a room down the hall. Still, the peace of mind I got from knowing my baby was growing properly was worth every nanosecond of the extra effort.
When to Consult a Specialist
According to Dr. Danzer, the ideal medical team for a pregnant APSer includes a rheumatologist and a perinatologist (high-risk pregnancy consultant) in addition to an OB. However, Danzer admits that women living in smaller communities may not have access to physicians who specialize in treating autoimmune conditions. Dr. Seligman feels that most APS patients probably don’t need a rheumatologist and would receive adequate attention with an OB and a high-risk consultant.
The Genetic Link
UCSF rheumatologist Lindsey Criswell currently is conducting a research study to identify the genetic and environmental causes of APS.* APSers often have family members with related autoimmune problems such as lupus, rheumatoid arthritis and thyroid disorders. Criswell is obtaining genetic samples from those with APS and/or lupus in an effort to determine the gene that predisposes an individual to develop various autoimmune conditions.
Indeed, three of the four women interviewed for this article have relatives with associated disorders. Kathy’s mother and grandmother have rheumatoid arthritis, as did Roberta’s great-aunt. Jacqui Ingledew, an APS mom in Kingston, Jamaica, had a cousin with lupus and has a brother with vasculitis, another autoimmune condition.
However, being genetically programmed for APS doesn’t mean a woman will necessarily develop the condition. The trigger mechanism that activates APS is unknown. It’s possible for a woman to have the APS gene, but go through her whole life without this gene being “turned on.”
Is APS on the Rise?
According to Dr. Seligman, the medical community didn’t officially recognize APS until 1983, when the test for the anticardiolipin antibody was developed. Seligman believes that doctors aren’t seeing more cases of APS, but instead are more aware of its existence and now have the technology to diagnose it.
Dr. Danzer disagrees, maintaining that we don’t know enough about APS to say for sure. He speculates that we could be seeing a rise in the number of APS cases.
“We’ve only been looking at APS for about 10 years, but I have a feeling it may be happening more often,” says Danzer, who suggests that environmental agents such as toxins or immunizations might be the triggers that activate the APS gene.
Making Peace With APS
For most APS moms, the toughest thing about the condition is dealing with the ghosts of past miscarriages. Jacqui Ingledew suffered three first-trimester losses before she was diagnosed with APS.
“I looked for the telltale splotch of blood each time I went to the bathroom,” says Jacqui, referring to her two subsequent successful pregnancies. Thanks to her prenatal regime of baby aspirin and heparin, she became the proud mother of two “golden children,” Jules, now 6 years old, and Georgie, 2 years old.
Describing her feelings about having APS, Kathy Hennessy says, “I really wasn’t scared. I think the only emotion I’ve really felt is more of anger…it wasn’t until I had a successful pregnancy with Emma that I began to realize that it might have been something as simple as a baby aspirin which would have made me a mom of two…that’s about the hardest thing for me to take. Then again, I could not ask for anything more than the wonderful daughter and husband that I have.”
Despite the difficulties APS has caused the moms in this article, we all agree our condition would not stop us from having more children.
“I totally blocked out the element of doing heparin, the added worry,” says Roberta. “I would definitely do it again.”
Kathy urges APSers to learn as much about the condition as possible. “The more educated you are, the more of an active participant you can be in your medical treatment,” she says.
Jacqui finds comfort in talking to others with the syndrome and in relying on her own spirituality. “You adjust to having APS and it gives you a certain strength,” she says. “What I mean is that it can be a positive experience. I suppose I called on my faith to help carry me through it and I see my sons today as the two greatest miracles in my life.”
A woman with APS has a slightly increased risk of getting blood clots postpartum than a non-APSer. Depending on the patient’s level of antibodies, her doctor may prescribe coumadin or baby aspirin for at least a few weeks after delivery.
As for the four APS moms in this article, our postpartum “complications” were no different from those of any other new mother: we all developed recurrent exhaustion and acute bliss.