Elijah Quinn Portillo is my first baby. I found about him on January 28th, 2023. I thought I was dying so I decided to take a pregnancy test and to my surprise I was pregnant. I was so relived but also scared and nervous. I told my husband and he was very surprised since I was on birth control. I didn’t know I was able to have a baby after doctors telling me it would be really hard because of my PCOS. I was so excited after the first initial shock and wanted to tell everyone. I was very anemic prior to this so pregnancy symptoms were hard on me. I had to get a blood transfusion and that is when I first saw my Elijah as a little sprinkle with a strong heartbeat. My husband joined me for the first time to see our baby at 11 weeks. We saw our perfect baby wiggling around and hearing his strong heartbeat was everything. We finally announced him on Easter and we and all our family and friends were over the moon excited for us. Unfortunately it was short lived excitement turn to full on worry and anxiety.
We got a call from my Ob’s office and they said we got something positive for a genetic disorder but they weren’t clear. We right away made appointments with a MFM specialist. On April 27th, 2023 we got the most devastating news. We got told that our baby boy who at that moment we found out he was a boy had something called Trisomy 18. The specialist was very understanding at first and suggested we do an amniocentesis to confirm and not to worry yet. He did tell us this diagnosis was fatal and not compatible to life and my husband and I cried for a few hours after this appointment. We got to see our baby boy at 17 weeks and his heartbeat was strong so it confused me; how can something so perfect have something so scary like Trisomy 18. We then went to do the amniocentesis in Santa Barbara and the whole process was scary but definitly very informative. It hurt to get the big needle into my belly and getting amniotic fluid out felt weird.
At 20 weeks we recieved the call that our baby boy indeed had Full Trisomy 18. I was so sad and grieved the idea of our future with our baby boy. My husband was numb at this point and had fully closed himself off from me and our baby. But I decided I was going to carry him to term. Throughout this time I was trying to figure out what our baby boy was going to be called and I say he named himself. For weeks all I thought about was the name Elijah so I thought maybe he’s trying to tell me that that was his name. So Elijah it was. I was still in a weird time in my pregnancy everything felt so unreal and I had hope that the tests were wrong but the MFM specialist said its about 100% positive and was adamant on terminating my baby. I just felt so horrible knowing that to the specialist my baby didn’t matter anymore. He than dismissed me and said some horrible words to me “well you know your baby will probably die inside you.” Those words were so hurtful and I started to stress and become afraid to see my OB. Thank GOD that my regular OB was so understanding and respectful of my wishes. He also told me about these foundations and got me pamphlets to help with what I was going through. He told me he wanted to continue mine and my babies care just like any other baby and their mama. We did have to have some difficult conversations but he was so good about doing what I felt was best for me and my baby. He took me out on leave when I was 33 weeks.
Every appointment leading up to that was nerve wrecking because I always feared I wouldn’t hear a heartbeat one day especially because he was so small and I barley felt him move around. I finally was able to relax at home and it was extremely hard because throughout this time I was grieving my baby. It felt so weird to grieve an anticipating loss. At our ultrasounds I was told he had a heart defect but I was never told how severe. Everything else was normal or nothing to be concerned about. We were told he had lots of hair and that he was wiggling around a lot for being so small, and his heartbeat was always so strong and beautiful. At 39 weeks and 4 days I went to see my OB to start my labor with a membrane sweep but I had high blood pressure and was admitted to the hospital instead. We found out Elijah was breeched and the doctor on call said he was about 6lbs, I was shocked.
On Saturday, September 23rd, 2023 I was prepared for a c-section and my sweet baby boy was born September 23, 2023 at 2:46 pm via C-section. He was 4lbs 4oz and very tiny. He was my miracle baby. The moment he was born he was struggling to breath and because we decided to do comfort/palliative care it was a moment filled with fear and anxiety. My husband went to cut his umbilical cord and right away had him wrapped up so he could have my son put against my cheek so I could meet him. The moment he was placed on me and I could kiss him and talk to him he let out these soft little cry’s. I told him over and over how much I loved him and how strong he was and how proud we were of him. Every cry brought ease knowing he was here alive. I stared at him and fell in love. He was my beautiful boy so perfect. He did have the Trisomy 18 clenched hands and his left hand was more bent than the other with his thumb just not really being a thumb, the specialist called it being like a skin tag. His left ear wasn’t fully formed either but gosh I just thought he was perfect. We finally were taken to our room where we had a photographer from NILMDTS foundation who took as many pictures of our Elijah and of our family meeting him for the first time. I was in awe and just couldn’t get over how this little strong boy made me a mama. He would get cold easily so he was always on my chest he felt so loved and safe there and I cherished every moment. He gave us a few scare; on was with his feeding tube he just didn’t like the placement and threw a fit over it making his heart overwork itself. We finally were able to feed him and have him be comfotable. He got to be surrounded by most of our family and friends and that to me was special to me.
He got to spend time with his grandma’s and aunts and great grandmas and great aunts. He got to meet our best friends and in all those moments life felt good and perfect. We were told he had Full Trisomy 18 and his heart was the only organ that wasn’t fully formed and had a defect called Hypoplastic Left Heart Syndrome. Ultimaetly we were told that every baby has a hole in thier heart when they are born and closes from the minute they are born to a week after. In our case because his left side of his heart wasn’t fully formed the hole was working in his favor but it would be the hole closing that would determine his fate. We got 58 beautiful hours with my baby boy and he went home on hospice for 6 of those hours, He passed away in my arms as I sang to him the song by John Lenon- “Beautiful Boy”. I will forever cherish every moment, picture, and video of him as much as it hurts. I know the amount of grief I feel is the amount I love for him. I hope other reading this can find comfort in our story.