As I approached 36 weeks the weekend of January 25th, I knew that something was off. But like my doctors, my family and friends reassured me that nothing was wrong. “Relax, don’t worry, get some rest.” These were the words of advice I heard over and over. After several days of swollen ankles, puffy eyes, pain on the right side of my abdomen, and just feeling sick, I decided to take action. I wasn’t feeling better, had to stay home from work for a day or two, and I knew something was off. I actually was browsing Facebook and found one of the Whatthehellp.com Facebook profile images on a friend’s wall. I read the description of HELLP and thought, “this really sounds like what I have.” This image triggered me to take initiative – and I’m SO glad I did.
The night was a blur. After some urine and blood tests, my doctor advised us to stay overnight and continue to be monitored. At this point, he made it seem like we should stay because of the snow and icy conditions on the roads – not because I was going to deliver my baby the next day!
The next morning, my doctor confirmed my fear and diagnosed me with pre-eclampsia and partial HELLP syndrome. I was given two choices for delivering – I could be induced for a vaginal delivery but since my platelets were dropping, my doctor said there was a chance I wouldn’t be able to have an epidural AND if my platelets dropped too much, I’d have to have a c-section with general anesthesia. He said labor could take anywhere from 12-18 hours and it would be very risky since my platelets were dropping by the hour.
After talking to my husband and sister-in-law, we made the decision to go with a C-section so that I could be awake for the delivery. I was so scared at this point and remember just being devastated that I wasn’t having the birth experience I imagined. I had no time to pack my hospital bag, finish writing my birth plan, or pick out my baby’s going home outfit. Around 10 am, January 30th, the nurses prepped me for surgery and we made calls to our family and bosses letting them know the situation.
At 12:20 pm, our little baby A was born! She had a full head of black hair and was as sweet as can be. She weighed 6 lbs, 6oz (which is great for a 36-weeker) and was 19.5 inches long. I saw her for a few seconds in the operating room but then she was whisked away to get cleaned and my husband went with her."
During the next few days, we had all sorts of doctors and nurses coming in and out at all hours. Baby A was suspected of some jaundice and they heard a heart murmur. I saw several lactation consultants who helped us with breastfeeding and I started pumping too just to be sure that she would get majority of my milk.
On February 3rd (4 days after delivering), my blood pressure still remained high and my mood was spiraling downhill. I felt incredibly anxious and not like myself. At one point, I felt like my blood was burning and just knew something was wrong. I remember telling my mom and husband but they thought I was just getting stressed out and worried over nothing. Around 1pm, I remember calling a nurse into the room and insisting that something was wrong. My arms began to shake, my heart was racing, I couldn’t get out of bed to use the bathroom. Everyone thought I was having a reaction to the blood pressure medication. I had this “out of body” experience which was a mix of confusion, delirium, paranoia – I literally thought I was going psychotic – and I think everyone in the room thought I was too.
I ended up having a CT scan done of my brain and chest, and they found a subarachnoid hemorrhage in my brain (which is bleeding ON the brain) from the high blood pressure. I was taken to the hospital’s ICU and separated from my baby at this point. After a few hours in the ICU while the doctors were trying to figure out what happened, they decided that they were not equipped to handle my complex case, and suggested I get transferred to another hospital 30 miles away for care in the neurosciences ICU. During this exact same time, baby A was taken to the NICU and had an electrocardiogram on her heart. However, because there was no medical reason for baby A to get transferred with me, she had to stay behind. This still boggles my mind to this day. If I am her major source of FOOD right now, how is that NOT a medical reason to transfer her? Why wouldn’t you want to keep the mom and baby together?
I was at the other hospital for 3 nights, which were pretty brutal on my body. They wouldn't let me get out of bed for almost 48 hours in the ICU which is pretty rough after having a C-section. I also continued to have episodes of delirium and confusion – especially at night. In addition, I was pumping nonstop every 2 hours just so she could have every single drop of my milk. Our parents would take turns driving back and forth between seeing baby A and seeing me. My husband would go visit our baby every day to give the nurses my pumped milk, but for the most part, he barely left my side. Through the miracle of FaceTime, I was atleast able to see her once a day and talk to her. It really sucked being apart from her though and I feel robbed of the initial bonding that a mother should have after delivery.
On Thursday, February 8th I was finally discharged and we drove straight to the hospital to see baby A. She looked so small and had lost some weight since birth. She also had to be on oxygen while in the NICU. It felt so weird and wrong going home without her but we had no choice. Thankfully, after 2 days, she was discharged and we got to bring her home on February 10th."
For those who think it can’t happen to you – I think I’m proof it can happen to anyone. I was very healthy, 29, and very low-risk. As a professional in the health care field, I can’t help but point out that there are some lessons learned here. First, trust your instinct - if you feel like something just isn’t right with your health, trust your gut. You know your body the best. Second, if you feel like your voice isn’t being heard, speak up again (and again and again). People may shrug off your concerns especially if the symptoms are perceived to be “normal” for your condition, but regardless, speak up, get your voice heard, and questions answered. I am so glad I took the initiative to check my blood pressure at the local pharmacy, and then, call the nurse when I felt like something was wrong after the delivery. If I hadn’t done those two things, who knows if I would be living to write this today.
Although my story ends here, baby A continues to face medical issues. She has struggled to gain weight and has been diagnosed with a congenital heart defect and bilateral ptosis (drooping eyelids in both eyes). We are waiting for genetic testing to get her evaluated for any conditions that may explain her issues. After an unsuccessful procedure in June to try and fix her heart, she is now expected to have open heart surgery in the next few weeks. Thus, parenthood continues to be an adventure…but I sure am lucky to be alive and to have baby A to hug and kiss every day."
About Ushma: "I work for a non-profit doing health services research, mostly in the field of patient engagement (ironic, huh?). My husband and I live near Raleigh, NC and have been married for almost 7 years, and together for 13 years! Although we were both born and raised in MD, we definitely got to the south as fast as could. We love the slower life and warm weather, and don’t think we’ll be leaving for a long time (if at all). I absolutely love doing anything DIY or crafty and can usually be found working on multiple projects at once – whether it’s baking, sewing, making cards, or DIY home décor."