I knew before I ever tried to get pregnant that I had Antiphospholipid Syndrome APS
I knew before I ever tried to get pregnant that I had Antiphospholipid Syndrome (APS). I was an extremely well-informed patient, and I had excellent care with a local OB/GYN that I trusted implicityly and a perinatologist that was a well-known APS researcher. My first pregnancy ended with a missed miscarriage at 14 weeks, but I was confident that my second pregnancy would be the one that worked.
About 17 weeks into my pregnancy, I experienced a day where all I did all day was throw up. I hadn't had morning sickness for the whole pregnancy, so I was a little concerned, but my husband and I assumed I just had a 24-hour bug. The next day I didn't throw up, but I simply didn't feel well. For the next week, I had a general feeling of unwellness, but nothing terribly specific. But at around 18 weeks, the pain started.
At first I assumed the pain, which was located just below my sternum, was heartburn. I'd never had heartburn, but I couldn't imagine what else the stabbing pain could be. It continued to get worse, until I was staying home from work. I asked a few people if this was really what heartburn was like, and they assured me that pregnancy heartburn could be really bad. I took the maximum amount of antacids allowed, but nothing helped.
I had my usual appointment with my perinatologist on a Wednesday, and I mentioned the pain. He suggested Pepcid AC. My urine showed only a trace of protein, so there was no cause for concern, despite the fact that I had to have a friend drive me to my appointment because the pain was so intense.
That evening, as I curled up in a ball on the couch and sobbed, my husband decided I needed to go to the emergency room. I refused, positive that the ER personnel would laugh at the pregnant woman who couldn't handle simple heartburn. We finally struck a compromise--I would page my local OB and if she thought I needed to go to the ER, I would. When my doctor returned the page, I was crying to hard to speak with her, so my husband filled her in. She also thought it was most likely heartburn, but said if the pain was bad enough that I couldn't talk on the phone, the ER wouldn't be a bad idea.
The first thing the doctor at the ER did was give me something he called a "GI Cocktail." It's a lovely little drink that numbs your entire digestive tract down to your stomach, and will apparently subdue even the worst heartburn. It made my tongue and throat numb, but did nothing for the pain. At that point, the doctor said one of the few things that has stuck in my memory: "I don't know what's wrong with you, but it's not heartburn." I was given a shot of demerol for the pain and then I had several tests (blood work, ultrasound, CT scan). After about 4 hours in the ER, all they could come up with was, "We can't find anything wrong except for some elevated liver enzymes. We think it's probably your gallbladder. Give your doctor a call in the morning." They discharged me and sent me home.
The next day I called my doctor and told her that I had elevated liver enzymes and the ER doctor thought I had something wrong with my gallbladder. My wonderful doctor, whom I credit with saving my life, said, "That doesn't sound right. Let me makes some calls and call you back." Within 30 minutes, she called me back and told me to go to the hospital for further testing.
From that point on, things become a blur. I was admitted to the hospital on Thursday and put on a morphine drip for pain. My liver enzymes skyrocketed, and my platelets dropped. My brother flew out from Minnesota in case he had to say goodbye. Every known liver disease was tested for and ruled out between Thursday and Saturday, when they finally settled on the final diagnosis--HELLP Syndrome. They told us that to save my life we would need to sacrifice the pregnancy. I asked if there was any way to just prolong the pregnancy long enough to save my child, despite the fact that I was only about 18.5 weeks along. The doctor told me, "I don't think you understand. It's not an either/or situation. If we don't end the pregnancy, both you AND your child will die."
On Saturday night a doctor placed laminaria (for manual dilation), and on Sunday I delivered a perfectly formed stillborn little girl, Margaret Marie. I held her in my arms, counted her fingers and toes, and decided she looked like my husband, who was weeping at my bedside.
I was tremendously blessed in my recovery. After delivery, I was in the hospital for only three more days. My perinatologist came to my hospital room on my last day there. He had two things to tell me--first, that there was nothing we could have done differently in this pregnancy. The HELLP Syndrome was nobody's fault, and it wasn't preventable. Second, he was sorry. He said that when I was in his office, he had a momentary thought of HELLP Syndrome, but he dismissed it since I was only 18.5 weeks along, and nobody developed HELLP Syndrome that early. I told him I'd always been an overachiever.
The first thing I saw when I got home was an ultrasound picture of Maggie. I cried for hours. After that, my husband gathered up the tangible memories of her, boxed them up, and put them in a drawer. On the anniversary of her birth and passing, we pulled out the videotape of the ultrasound and cried together.
After about six months after Maggie was born, I decided to try again. I miscarried at only five weeks. I remember thinking that at least it had happened early, but I was still devastated.
My perinatologist says that if I try to get pregnant again, we'll just hope that if I develop HELLP Syndrome, it's late enough that we'll be able to save my baby. He isn't worried about my health--he believes we'll be able to catch anything in time to prevent problems for me. But doctors don't think about emotional health, and if I had to lose another child the way I lost Maggie, I don't think I could go on. So now I have a dog, and a house, and I tell myself I don't need anything more. When my friends tell me they're pregnant, I smile and congratulate them, and then I go home and I cry and cry.
After surviving a very traumatic first pregnancy with a nightmare delivery (30 hours of magnesium-induced hell, ending in an emergency c-section) and even more debilitating recovery, one would think I was DONE having children. Let's be ...