My battle with ARDS took place when I was pregnant in 2016. In March, I was about 28 weeks along and came down with what I thought was a cold virus. It was that time of year and I had called my OBGYN’s office (their words were, we don’t deal with colds) and they told me what I could and couldn’t take for the awful cough. The fevers were persistent and cough kept getting worse. I felt awful so my primary care prescribed a z-pack and sent me on my way but a few days later I was still feeling horrible. It’s hard to remember the last week of my illness, but I had messaged a friend saying “I’ve never been this sick in my life!” A few days later my husband brought me to urgent care- I was not improving so they switched to another antibiotic and said it was bronchitis. By the end of that week, I was still feeling absolutely horrible and the baby wasn’t moving much which is when things started to get very scary.
I remember it was a Friday night, my fever wouldn’t break and I was delirious. My husband got me into the car and we drove 10 minutes to the hospital I was supposed to deliver my baby at. I remember stepping onto a scale and that was it. I am not sure if my life flashed before my eyes, if I “saw death” or if I was so close to my body shutting down…but I can’t remember anything.
The next day, March 12th, my son was born via emergency c-section at 30 weeks weighing just 3lbs 6oz and I had NO idea. I was given a paralytic and doctors thought that the c-section would improve things- it turns out I had double pneumonia and was in lung failure or ARDS. One lung was full and the other was at 75% so they performed a c-section and drained my lungs. I was in a medically induced coma and vaguely only remember a few hallucinations over the next 1.5 months. Apparently, I was getting worse. My lungs were shutting down and the ARDS needed to be treated, so the decision was made to prep me for ECMO, the highest form of life support. My son was in the NICU fighting for his life and I was transferred to a hospital in another state also fighting to stay alive.
I can only recall hearing snowplows go by and trying to drink from a washcloth that was dripping down my face as my forehead felt it was on fire from the raging fevers. I was intubated and soon after trached and I remember being extremely thirsty. The next month seemed to be hell on earth for my husband- I crashed on the ambulance ride down losing 3 units of blood, suffered a stroke, contracted pseudomonas and aspergillus while on life support. My tiny baby was In the NICU while my husband ran back and forth between two states trying to manage both of us. At one point when I first crashed on ECMO, he was told to make funeral preparations for me.
I somehow started making small improvements and by the end of a month, I was taken off of ecmo. I was finally transferred back to Yale’s ICU where I started to “come back” slowly but I could not walk, or talk or even hold an object. I thought I was a vegetable and would never lead a normal life. I was still hallucinating heavily and didn’t fully understand what had happened or how much time had passed. My bed was covered in family photos and photos of a baby- that baby was apparently mine. I didn’t name him, there are no photos of me holding him after he was born. The grief hit me and still feels very raw to this day- I completely missed the entire birth of my only child. I met Luke Alexander when he was 6 weeks old. He was so tiny yet felt like a cinderblock when placed in my arms. I was still trached and barely able to speak but I will never forget how amazing it was to hold my baby. The anxiety turned into adrenaline from that moment on- I wanted to get out of the hospital and get home immediately to be with my family. I had a long road ahead of me.
I spent a few weeks in Yale being treated for infections and getting some strength back with OT and PT. I had the most amazing nurses who spent hours trying to wash and detangle my filthy hair and make me feel like a human again. I could not be safely released until I was able to function again- so off to rehab I went with my feeding tube and trach still in. I slowly started to eat solid foods and spent my days relearning how to walk, climb and use my hands again. After several weeks, I finally got to come home- 2 days before my due date on May 18th, 2016. 4 hospitals later, I was free with an 8 week old baby.
ECMO saved my life but also did lots of vascular damage. My next year at home was a challenge as I wound up back in the hospital several times needing very complicated vascular surgeries to save my right arm and right leg from aneurysms and clots. I’m forever grateful to Dr. Timur Sarac and Dr. Jonathan Cardella for saving my limbs and putting me “back together again”. What I went through with my family was horrendous but I am grateful for the power of positivity, prayer, modern medicine, the countless doctors, nurses, PT’s, OT’s….and my husband and the village we had during the most difficult time in our lives. My husband was my rock through this. He saw the unimaginable and made sure he fought for me and our son. My medical nightmare has changed my life, it’s taken away my ability to have more babies…when I get sick, my doctors are diligent with my care but it hasn’t broken me.
Our son is our truest gift, he was the light at the end of a very dark tunnel and the only thing that gave me hope on some very dark days. He is almost 8 years old, excelling in school, hockey and soon to be a lacrosse player. He doesn’t know much about his grand entrance into this world but he’s an absolute miracle and shows us every single day.