Paris' Story

By Alisha Emerald

Let’s start at the beginning.

Not with my son’s birth, but with mine. A chilly November day, the first child born to excited parents, always with a little bit of a wild side. I was born, and only a few short months later I was diagnosed with a rare metabolic condition called Glycogen Storage Disease type 1A. My case was severe, and I would spend the rest of my life just fighting to stay alive. My body lacked an enzyme found in the liver that is necessary to turn glycogen into glucose. I was given a feeding tube and bolus fed a formula every few hours around the clock. Anytime that formula was not given, when it was late, or when I had an illness such as the flu that caused me to throw up, it was a life or death situation.

Fast forward 21 years. I was healthy enough, newly married to my college sweetheart. Due to my condition, my doctor had advised me to not have any biological children, and I was for the most part ok with that. I come from a family where two of my siblings are adopted, and I’d always known that blood doesn’t make a family, love does. I had just become a certified yoga teacher and I was ready for my life to really begin.

And then it happened. I knew I was pregnant before I ever took a test. I knew it deep in my gut and I begged myself to be wrong. I got violently sick, and I told myself it was probably just food poisoning even though I hadn’t eaten anything by mouth in days. I spent hours googling other causes for these symptoms I was having, and wished it was cancer. Not because I didn’t want a baby, but because I wanted one so badly and I knew the inevitable heartbreak that would await me.

On the morning of March 7, the anniversary of my cousin’s death, I couldn’t handle not knowing anymore and took a pregnancy test. 5am in the bathroom I peed into a cup with a smiley face on it, not wanting to test fate by not getting enough urine on the stick, dunked the stick for the recommended amount of time and waited. I left the room to join my husband in the kitchen, tried to eat some crackers to settle my nauseated stomach and convinced myself everything would be fine.

I knew before I knew but the test only confirmed it. I was pregnant. I called my doctors, and cried. We drove to the hospital, and I cried. I puked my guts out in the hospital bathroom only for a doctor to tell me there was no way a pregnancy at this stage could be making me this sick. The throwing up only worsened my metabolic symptoms, and my organs began working overtime. I was given a prescription for a common HG medication and told to go home and call my OB to schedule an ultrasound.

I never made it to the ultrasound appointment. I stayed up all night, alternating between crying and throwing up, forcing nutrition into my body while my hands shook. If this was only the first trimester, I knew I couldn’t survive an entire 9 months. The next morning my husband and I returned to the hospital, and this time I was admitted.

I was given IV nutrition, force fed so many calories. I had an ultrasound, which was the first and only time I saw our son. He wasn’t developing because my body couldn’t give him the nutrition he needed.

I stayed at that hospital for a few days before being told there was nothing else they could do for me, and I just needed to go home and try to control my nausea and eat more. That lasted less than 24 hours. That afternoon, my husband carried my limp and gray body into another hospital, demanding that these doctors do something.

The something to be done was to send me to a hospital 5 hours away that specialized in maternal and fetal health. These were the best doctors in the country, and if anyone could do something they could. I couldn’t even walk or stand up on my own but I had the tiniest bit of hope left. I pressed my hand to my belly and just kept whispering “Please be ok.”

My husband and I travelled by air ambulance in the middle of the night to the specialized hospital. We called my parents, and told them about the situation. We hoped and prayed and cried. At the city hospital, specialized doctors wondered why I hadn’t been admitted sooner, why doctors hadn’t taken me seriously when I first went in. I had a severe case of HG, and I was in organ failure.

I met a doctor who would later deliver my son, and she told me there wasn’t anything left. She said if there was we would try it, but my condition was deteriorating so rapidly, and based on the scans that they had done and were doing even if my son survived long enough to be delivered as a micro preemie he would encounter a life of pain and suffering, if not also an untimely and horrific death.

And so my husband and I made the decision that wasn’t really a decision at all. To save my life, and to save our son from a life of suffering, we terminated our pregnancy on March 14, 2018. During this surgery, I also ended up having my tubes removed, preventing us from trying for more biological children even if we wanted to.

Paris was perfect, and I couldn’t begin to wrap my head around the overwhelming feeling of guilt that I had failed him. As his mom I was supposed to protect him, and it ended up being my body that had resulted in his death. As if losing my child wasn’t enough, even after Paris’ delivery, my own body continued to fight against itself. While I was no longer violently ill or losing nutrition to the baby, my organs didn’t quite recover from the strain they had been under.

Over the months that followed, I spent a lot of time in and out of hospitals as doctors tried to fix me. Collectively we decided that my best shot at living would be a liver transplant, which I just received in August of 2020.

I never imagined I would be this girl. The woman who ended a pregnancy. A woman grieving her child and fighting for her life in the same breath. My life changed in every way possible. And being Paris’ mama changed me. The short time I had with him opened me up to a depth of love I wouldn’t have known otherwise. He reminded me that life is a gift, and I needed to fight for mine. And because of Paris, I moved into the sphere of grief work, and helping people come back to their bodies after loss and trauma. I wouldn’t wish losing a child on anyone. Being Paris’ mom is the hardest thing I’ve ever been, but it’s also the best. It opened up a new part of me I couldn’t access before, and like a pine tree that could now grow apples I grew new fruit because of him and our love. I miss him every single day. I have his name tattooed on my arm and I carry him with me everywhere I go and everything I do is because of him.

I wouldn’t change this experience, and the life I live now as an organ transplant recipient is more full and abundant than I ever could have imagined, which is something I don’t think I would have if it hadn’t been for Paris and the brave, crazy kind of love he gave me. I hope he knows how proud I am to be his mom. And I vow to keep sharing his story to change the world.