Babies, Brains, and Bleeding Disorders

It's kind of a weird title for a blog post, but this one has to do with all those things. As most of you know we have been trying for two years to have a baby. What a lot of you don't know is that I have a bleeding disorder called HHT (hereditary hemorrhagic telangiectasia). My dad has it. His dad has it. His dad's mom has it. You get the picture. It's hereditary and it doesn't skip a generation. So at least one of my children will have it. Basically, I have a lot of extra blood vessels throughout my body. So I bleed really easily.

Eight years ago I was diagnosed with 3 AVMs in my brain. Basically they are clusters of blood vessels and arteries that are formed improperly. The problem is that at any time they could start bleeding. And the result of the bleeding could be life threatening. But there was no treatment for them so here they still sit today.

Three years ago before deciding we wanted to start a family I went to a neurologist, hematologist, and a high risk pregnancy doctor. All of them agreed that these formations in my brain were not AVMs. And me, being the positive person I am, took that diagnosis to mean I was fine. There were some precautions we needed to take while I was pregnant, but that was doable. Nine months later we decided it was time to start a family.
 
Two years have gone by and here we are. We went to a new fertility doctor here in Virginia. I was blown away when all this new doctor wanted to talk about was my HHT. Well that's not why we went. I wanted to talk about babies! But, he was genuinely concerned about my getting pregnant. He wanted to know that these legions in my brain weren't AVMs. So that's what we talked about for the majority of the visit (in between my crying spells). We talked about the risks of my getting pregnant, of having multiples, etc. He didn't want to proceed with any treatment until I went to a new high risk doctor. He also wanted all records related to my HHT. So I was sent home with a "to do list", a bunch of phone numbers, and heartbreak. Why was he making me do all of this? I thought it was taken care of.

I left there so disheartened and defeated. I was mad at that new doctor! I wanted my old doctor back. I had already done all of my "homework" before we started trying. I had already had treatment. I had surgery. Everything was ready to go. Give me a baby, now. Our friends came in town that day and were at our house for a few days so I didn't really have time to think about it after that day. I woke up one morning and thought maybe this new doctor was right. Maybe we should be more careful. Maybe I should get a third opinion.

I talked to my mom for a while that day and we talked about when I was diagnosed with AVMs 8 years ago. We had gone to an HHT center in St. Louis. I remember them being really concerned. But it was a month before I got married so honestly I don't remember much more than that. All this time I had thought the neurologist had diagnosed me. But it was the HHT specialist who did. That is the whole reason I went to a neurologist 3 years ago for a second opinion.. Someone who would tell me it was fine to have a baby. After realizing that I had been wrong this whole time, that maybe these were AVMs, I thought maybe this new fertility doctor was on to something. So we decided that we were going to put off the mission for baby until we got another opinion.

I looked online and found that there is an HHT center in Baltimore. I called them, and they told me they only see HHT patients once a month. And that their August 23 date was full. The next day I called the nurse again to make sure that she had gotten my new patient form, and she told me that she moved a patient and that I would be seen on August 23. What a blessing. Of course we are in a hurry to figure all of this out because of baby plans. Also, a couple months ago we learned that there is now radiation treatment for AVMs. My dad's cousin just had it done. Also, good news.

Let me just tell you about my God. The past two years have been such an emotional roller coaster. No doubt about that. And, honestly, there have been times when I have questioned Him. But I can say in this situation I am not questioning him. Think about it. I haven't gotten pregnant in the past two years. After all the treatment I have undergone, and the surgery I had it was hard to understand why I wasn't pregnant. Two months ago we found out there was treatment for brain AVMs. All of a sudden. In the midst of my doctor appointments. We moved to DC and went to a new fertility doctor. He wanted me to get another opinion. And there just happens to be an HHT center an hour away. God is doing something. He is working. All the little pieces of this puzzle are coming together. While we are in such a hurry to be parents I have complete peace that this is what we need to do right now. I may not have a baby in my arms, but I have a God who is taking care of me better than I know how to take care of myself.