Fetal Monitoring
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."

APS Postpartum
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.