When Epilepsy Took Our Unborn Children

Statistics say that over 90% of women with epilepsy will have an uneventful pregnancy…  I guess I fall into the less than 10% category.

This is the hardest topic I’ve written about to date.  Not just for me, but for Ben also. Please understand I am not writing this for sympathy.  We’ve come to terms with it and live a joy filled life. I only write this to share my most personal experiences with you.

I’ve had eight confirmed miscarriages with no pregnancy to term.  In fact, none of them made it past six weeks.  For the most part they followed a pattern.  I would take a home pregnancy test and it was positive.  I called the doctor, made an appointment and when he did the test it was positive. A vaginal ultra sound would be scheduled a couple days later and it was gone.  Tests would reveal hormone levels had returned to normal.  One of the pregnancies terminated the day after the doctor got a positive test so I never made it to the ultrasound.  After the first couple, he suggested we try progesterone cream as soon as I knew I was pregnant.  It may have worked, but I never made it long enough for the doctor to try it.  By the fifth miscarriage I was labeled a “habitual self aborter.”

I was healthy with no obvious reason for the miscarriages.  All the tests (X-ray, MRI, ultrasound, etc..) of my female organs came back normal. He then decided to do some major blood tests. I’ll never forget when I saw the 13 empty tubes waiting for me.  I thought I was going to pass out and that’s before they began drawing it.  Afterwards, I was certain I needed a transfusion.  They ran an array of blood tests including; CBC, autoimmune diseases such as lupus, full body hormone panels, thrombophilias, etc, etc, etc…  When those came back normal, he thought maybe something with my husband was causing it.  That, however, was ruled out after I told them I had one with my first husband.  The odds of them having something in common to cause the miscarriages was astronomical. My doctor told me they could find no reason I couldn’t carry a child and I should keep trying.  I was angry and confused.  I knew that somewhere in my body was the answer.  But, alas I listen to him and we tried again.  I would go on to miscarry three more times.

My OB/GYN tested everything he could think of.  Everything except for my brain, that is.  In February 2013, six months prior to the tonic clonic seizure, and epilepsy diagnosis, I had my last confirmed pregnancy and miscarriage. In August 2013, when my epileptologist told us I’d had epilepsy my entire life and things that didn’t make sense before would start to; I immediately asked him about the miscarriages.  Did the epilepsy have anything at all to do with it?  He didn’t tell me no. Instead, he told me to talk with my Gynecologist about it.

I didn’t want to visit the same OB/GYN because I no longer trusted him.  I felt as if he should have considered epilepsy and tested me for it, so I got a referral to a new doctor. During my appointment, we talked about the epilepsy and how I was having hundreds of seizures a day.  Then the recurrent miscarriages in detail.  She was not surprised given the fact I was in status epilepticus with partials.  Epilepsy was, in fact, responsible for the miscarriages; however, not directly.

It all goes back to the brains order of operations again.  My brain was in distress and had to prioritize functions by importance.  It was taking all it had to keep me alive by keeping my heart beating, lungs delivering oxygen and kidney’s/liver filtering toxins. It was in survival mode and could care less if the uterine wall was ready to maintain a fetus.  Finally, we had the most likely answer, not only for the miscarriages, but the other thing that puzzled my original OB/GYN. I’d had eight confirmed miscarriages and not one of them required a D & C. They were all complete and required no intervention or follow up treatment.

I’m in the throes of peri-menopause so the chances of any future pregnancy is slim to none.  For that I am thankful.  Even with treatment and knowing it may be unfounded, I still fear the pregnancy would end in miscarriage. I’ve been through eight and I don’t want to go through any more.  I’m sure Ben doesn’t either.

To this day I still mourn each child we lost; so please don’t think I am a horrible person when I say the miscarriages were a blessing because I’m not.  I wanted nothing more than to have a child with my husband.  Each time I found out I was pregnant I was excited; we both were.  I still get a little envious when I see others who are pregnant or have children.  However, with the type of epilepsy I have, there is a very good chance of passing it down.  I live with it everyday and understand what it’s like.   I personally wouldn’t wish this on anyone, especially a child. Would you?

I’ve been asked if we’ve considered adoption.  Yes we have, but adoption with epilepsy isn’t easy. But, that’s a completely different topic for another article.

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One Response to When Epilepsy Took Our Unborn Children

  1. Rose Lynch says:

    I don’t know if this blog is still active or anything…but my story is exactly your story. I would love to talk with you about this as I have been on seizure meds for 4 years for partial seizures, but just had my first tonic clonic a month ago. And I’ve been TTC for almost 8 months with 2 “chemical” miscarriages just like yours.

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