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How Behcet's Disease Has Complicated My Pregnancy

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When I found out I was pregnant, I was completely overjoyed. But I was even more excited over the fact that I would be having twins! It was the blessing I had needed. I was over the moon about it. But that excitement and happiness was short-lived. I had no idea the obstacles that would be thrown my way. I had no idea it would put me in the fight of my life.

When you have a rare disease, you get used to receiving bad news. You know how the disease can manifest and the complications it could bring for you, so you learn to accept that more bad news could possibly come. But nothing in this world could’ve prepared me for what I was about to endure.

In Behcet’s disease, the disease typically goes into remission when you’re pregnant. That’s usually the case for most women. But in me, that didn’t happen. The flares started up almost immediately. The joint pain, mouth ulcers and skin lesions broke out like hell. The fatigue was absolutely debilitating. I knew pregnancy wouldn’t make it any easier on me. But I was OK with that. I had dealt with flare-ups for nine years; I was used to it. I was used to dealing with minor complications as well. But my pregnancy brought out huge complications that put the fear of God in me.

One day, I had a lot of chest pain and shortness of breath. I wasn’t able to walk long distances. I couldn’t even walk from my living room to my kitchen without needing a break to catch my breath. I used my inhaler and nebulizer, thinking it’s just another one of my usual symptoms flaring up. But I was extremely wrong. As the day went on, it got worse and worse. Then that afternoon, my mother noticed my lips were sort of blue. She got my pulse ox to check my oxygen and heart rate. I will never forget the look on her face. Her eyes got really wide and she said my heart rate was 250, which is extremely high. She told my boyfriend to get me to the ER and he flew. The doctor ordered blood tests which indicated I had a blood clot. He ultimately decided to do a CT scan, because the benefits outweighed the risks. I hated it, I didn’t want to expose my kids to the radiation. But I knew I had to do it. It ended up being the best decision to make. The doctor came back in the room and told me I had multiple blood clots in my lungs, which were probably caused by one in my leg. Ultrasound revealed I did have a clot behind my knee in my left leg. I was admitted to the ICU where hell broke loose again.

My oxygen dropped every time I sat up. I was on a variety of medications, specialists came in left and right, my IV kept blowing out. I was in a lot of pain and having trouble breathing. They decided to do an ultrasound of my heart and that revealed more concerning problems. I had a lot of fluid around my heart from the clots, and I was also in resting heart failure.

When I say I was scared to death, I seriously mean it. I was scared, nervous, worried. I needed my kids to be OK. I needed these clots to dissolve. I needed to survive this. And thankfully I did. Once the blood thinners started kicking in, things got better. The fluid around my heart and the heart failure resolved, I could breathe, my oxygen stayed normal. Things were improving. I was transferred out of ICU and into a normal room. I stayed there for all of a day, if that. My hemoglobin and iron dropped dramatically. I needed a blood transfusion. So I was hauled back to ICU. I stayed there for a total of eight days. Then I was finally clear to be discharged. The babies didn’t seem to have any problems, so they determined that the clots and medications didn’t harm them. This was a huge relief. All I wanted was for them to be OK. The babies were growing and their heartbeats stayed strong. It was such a blessing.

photo of a woman and her partner next to two ultrasound photos of her baby

A couple months later, I saw a maternal fetal medicine specialist. Since I’m a high risk pregnancy, I had to see them for a consultation. When I did, I learned my problems were far from over. They told me I have complete placenta previa, which means the placenta is covering my cervix. This puts the babies and I in some danger. I run a high risk of preterm labor and bleeding out. So, at only 15 weeks pregnant, he put me on bedrest. He also told me I would not be able to have a normal delivery, I would need a C-section. My heart broke, but I knew it was for the best. I’m currently 17 weeks pregnant and every day that I don’t bleed or have contractions is a blessing.

I had no idea how hard this pregnancy would be. I had no idea being pregnant with my boys would bring so many dangerous complications. But I try not to live in fear. It’s hard, it’s extremely hard. But living in fear and being stressed will only stress my pregnancy more. So I try to take it one day at a time. And I pray my kids stay protected. As a mom, that’s all you want. No one is ever prepared for complications, and no one wants to believe it can happen to them. But the fact is it does happen. And the earlier these things are caught, the better. If these complications hadn’t been caught, the boys and I probably wouldn’t have survived. It’s a scary thing to think about, but it’s true.

I thank God every day for protecting my kids. But I also thank him for making them fighters. They definitely take after their father and I.

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Originally published: January 12, 2018
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