Adeyling Fiallos Soto’s Story

Too small to be seen or heard

I had a missed miscarriage over the summer of 2018. It was my first pregnancy and it came to an end soon after my OBGYN found that there was no heartbeat at my 8-week ultrasound. I remember being so excited and hopeful that our baby was simply too small to be seen or heard. We decided to check in with my doctor once a week for almost three weeks, while I also waited to miscarry naturally. I didn’t, and I ultimately opted for a d&c. We thought that was it. We heard miscarriage was common and we thought we’d never lose another baby again.

Turns out we were wrong.

diagnosed with thanatophoric dysplasia

I was 19 weeks pregnant with our second child, whom we named Sage when we learned he had a rare skeletal disorder that is considered incompatible with life. We found out at his anatomy ultrasound. I’ll never forget. It was a very long and quiet ultrasound. We didn’t know our baby’s gender at the time and we looked away from the screen several times to avoid finding out. We wanted to be surprised at birth.

After the ultrasound was finished, a doctor came in and after introducing herself, she looked me up and down. “How tall are you?” she asked, “5’1,” I said. “Ok, so you’re normal height.” She proceeded to tell us, “I’m going to do a little bit more scanning because we noticed a few things, and want to make sure that what we are seeing is correct.”

Something was indeed off.

She finished her scan, cleaned my belly, and helped me sit up. She took a big sigh and told us that Sage’s limbs and chest cavity were five weeks behind where they were supposed to be at this stage. It appeared our baby had a form of dwarfism and it looked like a lethal anomaly.

There are over 400 diagnosed types of dwarfism and one out of the three most common types is lethal. An amniocentesis later confirmed Sage had it. It’s called Thanatophoric Dysplasia.

Making memories with hope and love

The term Thanatophoric is Greek for “death bearing” and infants with this dysplasia are usually stillborn or die after birth from respiratory failure (due to the underdeveloped lungs). A defective gene usually interferes with cartilage and bone development, and it occurs in people with no history of the disorder in their family. It’s not hereditary, or generational. Our doctors told us it was simply a ‘fluke.’

I carried Sage for as long as I could. Despite his prognosis, there was hope and there was love. Lots of it. I wanted to carry him to term and knew that because of his condition, he could come sooner. I spent every minute loving on Sage while he moved inside me. We enjoyed our time together as much as we could. I visited the Lincoln Memorial in Washington D.C. for the first time with him. We went on road trips, spent a lot of time at the beach, explored new restaurants, and ate lots of food. We took lots of photos and spent quality time with family. We continued our daily life as normally as possible. Of course, there were very, very difficult days. I would pray hard and beg for a miracle. I’d cry myself to sleep.

meeting our son sage

Sage made it earthside at 31 weeks. He was born on Wednesday, January 29th, 2020 at 8:24 am via a vaginal delivery. He weighed four pounds and measured 14 inches.

When he came out, the room was in complete silence. No one said a word. He was born almost still. His heart beat slowly. I heard him take two big gasps on my chest. He never opened his eyes. He didn’t cry.

Our team of doctors and nurses kept Sage as comfortable as possible after his birth. A chaplain baptized him, and each family member that was there got a chance to hold him.

The whole day was bittersweet. We were happy to meet him, but sad our time with him was short. A lot of tears were shed.

Sage died in my arms at 9:25 am.

cherishing the time

After he died, we kept him in the room with us until it was time to go home. We spent a total of 32 hours with him. We talked about how precious he was. We bathed him, we changed him into his onesies, and we wrapped him in the dinosaur blanket we had picked out for him. We cherished every moment and remained calm for the most part.

At 5 pm on Thursday, the funeral home director picked him up. When she closed the door, I collapsed on the floor. I didn’t think my heart could break anymore and it did. Letting him go, knowing I’d never see or hold him ever again was the hardest moment in my entire life. Nothing has been the same ever since.

in remembrance and honor

Our story doesn’t end there. So much has happened since Sage’s birth and death. One of them is the opening of a candle shop. It honors him and all the babies that left us too soon. It gives back in their memory.

So much has changed. I changed. The person I was before him doesn’t exist anymore, but I’m here today. A little braver than I was yesterday.

Sage has a little brother now. His name is Skye, and he is one year old. Every day when we enter his room to pick him up from his crib, we say good morning to him and to Sage. There’s a huge canvas of Sage on the wall and his urn is there too, next to a shadow box with a onesie and hat he wore. His footprints are framed. His name is spoken daily, and we think of him constantly. Sage will always be remembered.

I’m grateful for the community that gathered around me, that has opened its arms and welcomed me into the club no one wants to be a part of.