r/Seattle

I’ve been with Swedish First Hill throughout my pregnancy and wanted to share my frustrating experience.

Back in May, a genetic counselor confirmed I’m a carrier for Factor XI deficiency, a (rare) bleeding disorder my dad has severely. I was referred to Swedish Hematology, who requested labs through my midwife. After completing them, I was told hematology had reviewed my results and I wasn’t at increased risk of bleeding.

Later, while looking into switching to UW Northwest due to other issues with Swedish, they flagged my Factor XI history. Turns out, Swedish had never actually tested my Factor XI activity!! They tested Factor VIII and other clotting factors instead.

I brought this up with my midwife, who said she’d consult hematology and order the correct test. Another blood draw later, they got it wrong AGAIN. This time testing Factor II, Factor V, but still no Factor XI.

Now I’m 8 months pregnant, and knowing my Factor XI levels is important for planning delivery. I tried calling Swedish Hematology, got transferred 4 times, then was redirected to Ballard, where multiple calls and a voicemail went unanswered. I couldn’t reach the genetic counselor either.

By this point, 4 different people had reassured me I wasn’t at increased bleeding risk and didn’t need hematology, despite never testing my Factor XI activity.

I finally contacted the Washington Center for Bleeding Disorders myself, and they said I should be seen ASAP given how far along I am without knowing my levels or having a delivery plan.

I also filed a formal complaint, but their response was about an entirely different specialist I saw for unrelated genetic cancer screening.

I’m shocked by the lack of communication and urgency, especially this late in pregnancy. Sharing in case anyone is considering Swedish First Hill for maternity care. Unfortunately, this isn’t my only issue with them, and I’m happy to share more if anyone is interested.

I am not deep pocketed and frankly don't care about this issue enough to throw my life into it. But I am fairly certain that it would have broad support. How does one start the snowball rolling?

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