In April of 2015, what seemed like a normal day ended with me going to the emergency room for stomach pains. While at the hospital I was given a pregnancy test and to my surprise it was positive. I didn’t plan on getting pregnant. I was shocked but extremely happy. This would be my first child. Throughout my pregnancy everything was great despite having lots of morning sickness. All my appointments, pre natal screenings, and ultrasounds were normal without any issues.
At my routine 27 week prenatal visit I was scheduled to have my glucose tolerance test. While waiting, I was seen for my routine appointment. When the nurse took my vitals she informed me that my blood pressure was high. I was then seen by my physician who rechecked my blood pressure and spoke with me about preeclampsia. He then went on to check the babies heart rate and had a hard time locating it and began an ultrasound. While conducting the ultrasound to locate where the baby was laying I learned the worst news of my life, my baby didn’t have a heartbeat.
Since I was 27 weeks pregnant, I had to go through the delivery process. Trying to grieve and give birth was the hardest thing I ever experienced in my life. After being in labor for about 9hrs, I delivered a baby girl named Nyla.
After my baby was delivered my doctor suggested I get an autopsy to find out exactly what happened which will be helpful for future pregnancies, I agreed. After I delivered Nyla I was too afraid to hold her, I live with this regret. I then had to stay in the hospital for 2 days to recover like normal. The worst part for me was being on a postpartum floor hearing the babies crying, and my baby was gone. My anxiety was horrible, I didn’t sleep, and I felt triggered by being in the hospital and leaving without my baby. I received a keepsake box with pieces of her hair, her footprints, and the hat she wore. My emotions after this traumatic event were sad, angry, and confused. I didn’t understand why this happened.
At my 6 week postpartum visit my doctor informed me that the autopsy came back and there was an abnormality. Nyla suffered from GALD (Gestational alloimmune liver disease) a gestational liver disease or neonatal hemochromatosis. My doctor admitted he’s never heard of this disease but did some research on it. GALD is extremely rare and causes liver failure in newborns. This happens when an abnormal amount of iron crosses into the placenta and accumulates in the fetal liver. Babies who don’t pass away in the womb, ultimately will suffer severe liver failure and need a transplant within the first few days of life. The only way to detect GALD is through autopsy when you are affected by this fatal disease. I couldn’t believe what I was hearing. He also informed me there is a 90% chance of this happening in future pregnancies.
After doing my own research, I emailed a physician in Chicago who studies GALD to share my story. He wanted to review my autopsy slides so they were sent to his office. He confirmed the diagnosis and informed me of an expensive but effective treatment in future pregnancies, IVIG. I had no plans on trying again this was too traumatic for me.
Fast forward, 8 years later and completely unexpected, I got pregnant immediately after my wedding. I was afraid for what I had to endure. Every appointment, ultrasound, and checking the babies heart beat was a tremendous trigger for me. I was informed at 14 weeks I would need to start weekly 6hr long IVIG infusions to help block this from happening until delivery. I spent most of my pregnancy at an appointment. I had weekly non stress test and weekly infusions. Besides what I had to go through to keep my baby safe, my pregnancy was smooth. My pregnancy was extremely high risk. I was scheduled to be induced at 37 weeks when my baby was healthy enough. On April 11, 2023 6lbs 2oz my rainbow baby Bailee was born. Bailee was healthy and free of GALD! I was so happy the treatments didn’t fail me. I couldn’t believe I had a healthy baby. I was so anxious when she was born and begged the doctors to check her liver. All test came back normal and she was healthy! Although I endured a lot with having a healthy baby, I wouldn’t trade it for anything in the world. I was so happy to be given a second chance at being a girl mom. GALD is very rare and scary. I felt so hopeless hearing this diagnosis because there is minimal information on it. But I still remained hopeful. I want any woman out there who encounters this fatal disease to advocate for yourself and remain hopeful. Do not give up on your dream of becoming a mom because it is possible!
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