Many of you know that a little over three years ago, I was diagnosed is an auto-immune/vasculitis disease called Behçet's disease. Since that diagnosis I have had "outbreaks" of the disease about every 5 months, sometimes resulting in a hospital stay but usual just treated with heavy steroid treatment and antibiotics. When we received the diagnosis, I spent hours on end reading everything I could about Behçet's so I could be prepared for my future. The interent is a wonderful tool, but it can devastating and terrifying too. I learned that it an is incredibly rare syndrome and that is it even more uncommon for a caucasian woman to have. Because of this rarity, little is actual known about how it effects me and would play a role in my future. Among the research, I found a lot of people claiming that I would be in pain the rest of my life, never live to my full potential because of muscle and skeletal weakness, lose my sight, and even not be able to have children.
The last part was most devastating. I talked to my doctor and confirmed that yes, there was a pretty good chance that I would not be able to have kids. Part of the nature of the disease is that my immune system declares war on healthy cells in my body. It turns on itself and thinks that everything is a foreign invader. This is why pregnancy was unlikely. If my body rejects its own cells, an ACTUAL invader (baby) would be the first thing it would be likely to attack. It hurt to hear, but over time, Brad and I accepted this possibility and planned to adopt in the future. In the back of both of our minds we kept hope though that the lack of knowledge about the disease would mean I had more of chance, and that maybe we would be blessed with a miracle.
Fast forward to about 6 1/2 months ago. It had been almost 10 months since my last Behçet's outbreak and even with the stresses of graduating and moving, I had stayed really healthy for a change. I started to get terrible migraines that caused blindnes and slurred speech. The doctors went through a series of blood tests and even an MRI to see what was going on. As I waited patiently in the exam room, expecting to hear my good luck with health had run out and the Behçet's had progressed to veins in my brain (which could happen), a giddy nurse rushed in the room grinning and told me the doctor would be in in a second. The doctor came in and explained some of the test results. He told me I was experiencing something called cluster neurological migraines and oh, that I am also pregnant but not to worry because the MRI couldn't hurt the baby, and the migraines are probably from the pregnancy hormones.
I was in shock. I couldn't even comprehend what he was saying. I walked into the hall and called Brad who was waiting to hear the test results. I had always thought that if I ever got pregnant I would plan some awesome way to tell him; that is would be something we would remember forever. But instead, I just blabbed right there on the phone without any warning, to which he responded "Really? That's awesome! I will talk to you when I get home loveyoubye," and he hung up. I guess he was as shocked as I was. I next met with the OBGYN who confirmed with 2 ultrasounds that I was indeed about 8 weeks pregnant and that the baby looked healthy and all was well.
I should have been relieved, and I was beyond happy, but I knew we weren't in the clear. I had read horror stories about women whose Behçet's flared up while pregnant and because they couldn't take their steroid regiment they ended up hospitalized and lost the baby. I also knew that even WITHOUT an autoimmune disease, the chance of a miscarriage in the 1st trimester are about 1 in 3. I made Brad swear not to tell a soul until we passed the 1st trimester. Needless to say, he was a little too excited to keep a secret, but it turned out okay because we made it through the 1st trimester. Not only did we make it through, but I felt amazing! I was healthier than I have ever felt in my life. I didn't get sick, I lost a bunch of weight, I had energy; life was good.
The second trimester came before I knew it, but I was still scared. I couldn't shake the thought that at any moment Behçet's could strike and take this baby from me. At 14 weeks we found out he was a boy, and at 20 weeks we found out he was a HEALTHY boy. He was growing fast, his heart looked great, and all was well with him. It all felt like a dream. How could I be this lucky? The doctor explained that there was 2 ways my body could react: 1 it could have gone into attack mode and we would have lost him, or 2 the pregnancy hormone that usually suppresses women's immune system durring pregnancy could suppress my immune system to the point that I go into a "remission" while pregnant/breastfeeding. My body seemed to be choosing option2 by some amazing miracle.
The holidays came and went, and now here I am in the third trimester, only 6 weeks from my due date. I guess any normal person would count their blessings and just accept that all is well, but I am a worrier. I feel so grateful that we made it this far, and I know that my body is doing awesome in baking this little guy. He is moving so much and growing more and more everyday, but the stress of what COULD happen is still in my mind. I made the mistake when I was first diagnosed of reading about a woman with Behçet's whose baby was born covered head-to-toe in sores and so sick that it needed medical intervention to survive. I couldn't help but to wonder what I had doomed my baby to. Is he going to be okay? When these thoughts come, I have to remind myself that Behçet's is rare, and even more rare for caucasian women. There is little research on how it effects women like me, let alone during pregnancy. There is even less research about how it effects their children. One woman's story is not an indicator of how I will be. There are too many variables to even compare myself to her, and I have had the pregnancy from Heaven, so who's to say it won't continue that way into labor?
In all of the stress of these thoughts and worrying about what is going to happen, I received an update this morning from a blog I follow on Behçet's research. I love how the Lord works: when I am having a hard time, the timing of this other person's post was perfect. The post was about a new study that was released at a recent conference for vascular diseases. The study followed 15 women with vascular diseases (8 had Behçet's) and their pregnancies. The study group is small, but with so few of us they were probably lucky to find that many. Basically, the findings were that if the baby lived past the first trimester, they were born healthy babies to healthy moms. Only 2 of the Behçet's moms even had an outbreak durring their pregnancy and it was early on and NONE of them had babies with complications. This might be the most relieving and happy study I have ever read. I know most people don't even care, but to me those babies give me hope and make me feel like the chances of Hezekiah having problems are rare. Such a blessing! The only interesting thing to note, is that almost all of the babies were born before 40 weeks...so I maybe will have an early baby?
I know this was long, but I had to write it all down before I forgot how I have been feeling. I know that everyone deals with their own trials and fears, and it is sometimes good to be reminded that we are not alone, and the future is not as scary as it may seem. I am so grateful to be carrying this little boy and I can't wait for him to be in my arms. I am also excited to have a wonderful successful labor and delivery and healthy baby so that someday when some scared girl is researching Behçet's disease after a diagnosis, she can see what I went through and know that it is possible for everything to okay.... actually, better than okay: perfect.
If you are curious about the details of the study that I am talking about, the abstract can be found
HERE
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