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Saturday, October 17, 2009

#11 - CLOTTING TEST RESULTS

We had a much anticipated follow-up with our midwife on October 8th. We went over the test results for the clotting disorders that I had been tested for. The good news: everything looks good. The bad news: everything looks good. The result: mixed emotions from hell. I am happy that there is no identifiable medical issue lurking under the surface, yet I had been hoping that the tests would give us some medical reasoning for the substantial degree of placental infarct that had been discovered postpartum – something that could be treated medically during future pregnancies. We discussed the implications of the ‘clean bill of health’ with Sue, and she recommended a preconceptual visit with one of the docs in the practice that handles higher risk cases. We discussed the implications of traveling to Africa to visit my sister before, during or after the next pregnancy – a conversation that seemed pretty ominous to me once we started discussing anti-malarial drugs.


Over the last week, I have had the opportunity to talk to or hear from several ladies who have had similar circumstances of placental infarct and late gestation stillbirth. Long story short, they have all tested negative for the same clotting disorders that I have tested negative for. They have all been referred to Maternal Fetal Medicine specialists. They been told by the MFM specialists that testing for clotting disorders is still in the early stages, and research is ongoing for additional tests and testing methods. They have all had Lovenox and/or baby Aspirin prescribed for subsequent pregnancies despite the absence of positive testing.


This information has created quite a storm within my brain. I firmly believe that pregnancy is typically not a medical event, and I really don’t want to turn my future pregnancies into medical events if it can be avoided. However there is a little voice in the back of my mind that constantly reminds me of something I always tell my patients: ‘If you are at all unsure about what you are getting from the doctor, it is absolutely your right and responsibility to seek out a second opinion. You are your own advocate – if you don’t make it happen for yourself, it will never happen.’ Ultimately, the big question for me is whether we should dig for more answers or just leave it alone. If there are answers out there, I certainly want to find them before we attempt another pregnancy – but I don’t know how much I want to keep digging if there is no legitimate answer to be found, simply because doing so would continue to dump salt in wounds that remain pretty raw. I am completely torn at this point.


I totally trust our midwife’s judgment, and I really have no desire to get my regular prenatal care from anyone other than her and the other midwives in our group unless it is absolutely medically necessary. I know that I need to see one of the docs in the practice at this point, and it is their responsibility to refer us for anything outside of the practice if they feel that it’s appropriate. I am, by nature, leery and skeptical of most physicians, regardless of specialty. So I am, by nature, skeptical of whether the doc would even refer us to the MFM specialist if we requested that referral during the preconceptual visit. If we cannot get the referral from the OB doc, I have an awesome primary care doc that would probably make the referral for us – but this route, theoretically, has other implications that could complicate the situation. Wish that the ‘right’ answer was easier to figure out.

4 comments:

heathermohr said...

I will be thinking of you as you make this decision. These decisions are never easy. I've had to make so many of them this year and, unfortunately, the old adage "practice makes perfect" does not seem to apply to decision-making.

Jessica said...

Hello, I came over from babycenter and read your post. I lost my son literally a month to the day before you, July 1st and I am still seeking out answers. I was just diagnosed with Factor V Leiden, a blood clotting disorder and on my way to the hemotologist tomorrow. I hope you find the answers you need. Thinking of you.

Tash said...

Here from LFCA -- I'm so sorry for your loss, please know that you're not alone. Remembering Gracie with you.

KuKd Chick said...

Ahhh, the answer-seeking conundrum. I remember digging so hard for explanations when we lost our little one, and of course they were nowhere to be found. Sounds like you have some good info to start with. Very sorry for the loss of little Gracie.