“Today is Aiyana’s 100th day in the hospital in her short, almost, five months of life. Her two-year-old sister Leilani and I started Aiyana’s life with seven weeks in the Children’s Hospital of San Antonio’s NICU, after Aiyana was air flighted on day three of life from McAllen, TX. After discharge, we spent six difficult weeks at home, before another air flight was needed to Dell Children’s Hospital in Austin, TX. We’ve been here seven weeks, so far. Thankfully, we have found a medical team here that believes in Aiyana, but it hasn’t always been that way. She has had countless people along the way dismiss her right to existence and proper medical care because she was born with a rare and medically complex genetic disorder called ‘Trisomy 18’ or ‘Edward’s Syndrome’.
It’s been an unexpected and extremely difficult year. Life as I knew it has imploded and unraveled around this diagnosis, but I continue to fight for Aiyana’s life because I believe in the core of my being that she has a story to tell and purpose to uphold. She shouldn’t be alive right now, according to the life-limiting T18 odds and statistics stacked against her, but she continues to defy it all and push forward, shocking everyone and changing the hearts and minds of everyone she comes in contact with. We’ve learned that T18 is a spectrum, like Down’s Syndrome (Trisomy 21), and that each child needs to be evaluated and cared for individually, not as their diagnosis because they don’t all do or act the same. As long as she has fight in her, so will I.
‘…What’s the point? She’s going to die anyway,’ the neonatologist said. That’s what I overheard the neonatologist assigned to Aiyana’s birth say in the corner of the room, while I was in early labor Aiyana. I was laboring alone, my husband and I’s marriage in shambles at that point, with my doula and midwife present. It was the complete opposite of the Bradley Method, unmedicated, almost entirely home-birth with my husband doting on me that I’d had birthing Leilani, a year and half prior. But I was convicted that Aiyana deserved a chance at life and I wasn’t going to let any negative or ill-informed doctor affect her in any way. So, a medicalized birth it was to ensure her life safely.
The fear, loneliness, and anxiety I felt during those 30 hours of labor was soul shaking. It was miraculous that she had made it to 39 weeks as an intrauterine growth restricted T18 baby with severe brain and heart issues, despite the statistic that 85% of babies with T18 pass away in utero or are stillborn. Was she going to be one of the rare few to be born alive and the even rarer few—less than 10% of those born alive—to see her first birthday? At 2:23am, on September 21, 2018, my 4lb. 13oz. living unicorn was born, with a full head of hair and a palpable will to live. There wasn’t a dry eye in that delivery room, including the neonatologist.
‘Did you know about Aiyana’s diagnosis during pregnancy?’ the pediatrician asked me, during our first visit. ‘Oh yes. I found out through NIPT that she was high risk for T18 at 13 weeks and had a confirmed diagnosis by amniocentesis at 20 weeks,’ I said. ‘And you continued the pregnancy anyways?’ he said in a shocked and condescending tone, as he shook his head.
I’ll never forget when I heard my midwife say the words Trisomy 18 to me. It was the first time I’d ever heard of this disorder before. I had no idea what it was or meant, let alone the journey that was ahead of me.
I had finally stopped hemorrhaging after having a sub chorionic hematoma surrounding 90% of Aiyana’s gestational sac for the first 12 weeks of pregnancy. My husband and I thought we were ‘in the clear’ and could finally relax and enjoy the pregnancy without the weekly fear of a miscarriage. We’d just announced the pregnancy a few days prior to family and friends.
Incompatible with life. Termination. Disfigurement. Developmental issues. Death. That’s what I remember from my first learning about T18. That’s how it’s taught in medical and nursing schools. I left that appointment and immediately began researching everything I could. I joined a few Facebook groups for parents of T18 kids, living and deceased. I saw photos of young kids and babies. Some smiling, walking, eating, using tubes and traches, living and recently passed. I saw a tribe of parents all going through the same thing, together. It was terrifying but gave me hope that Aiyana could possibly make it. I decided to trust my baby, God and my abilities as a mom, and chose to see this through, no matter how hard or short her life would be. I could physically feel her strength inside me and knew there was more to this than the statistics but was worried about her quality of life and how this would affect our life.
My marriage was falling apart. He wanted to terminate the pregnancy for fear of inflicting unnecessary suffering on her. He loves Leilani so much and couldn’t bear to see his new baby daughter in pain. But I felt convicted. That moment in the car ride home, where we fought about whether to terminate or continue was a turning point for us. Up until that point, the pregnancy had been a renewed sense of connection between us, after a very hard year prior, but he felt unheard and unimportant in the decision process. I felt, ultimately, it was my decision because it’s my body and mind that has to live with it, either way. He sobbed on the patio that night as he wrestled with the mortality of his unborn child and came to me the next day with a name, Aiyana, and the support of whatever decision I made. But we never truly came back together from that point on and are now finalizing our divorce, as Aiyana approaches five-months-old.
I’ve always joked that Aiyana’s tagline is ‘hurry up and wait.’ The unknowns of this disorder are unrelenting at times. It eats away at you. You second-guess everything, many times over. I messily navigate co-parenting and review the first draft of our divorce decree and wonder if this has been worth it. Seeing Aiyana for the first time, after her open-heart surgery a couple weeks ago, brought me to my knees in utter defeat and made me question whether I crossed a line between fighting for life and suffering. The bone-tired, guilt I feel daily, as I drag Leilani back and forth to the hospital and Ronald McDonald House makes me evaluate my priorities as a mother and whether I’m doing what’s best for her.
But then I see Leilani and Aiyana together. Leilani gives her a kiss and rubs her head. Aiyana flashes her a new smile. All is right in the world and I settle back in to why I’m choosing to push forward in this unexpected journey. Because Leilani deserves to spend a life with her sister and Aiyana deserves a chance to live the best life she can live, for however long that is.
So, I trade my ‘wife’ and ‘mom’ identities for ‘single’ and ‘medical mom.’ I research and learn endlessly, so I can speak with doctors on their level and advocate for Aiyana’s needs, like her newly found liver tumor and possible cancer, seizures, GI and feeding issues and more. I do everything I can to create as much normalcy as I can for Leilani, during all of this. I tell myself ‘because Jesus’ to remind myself how I should act through this divorce into co-parenting and beyond.
I keep moving forward and fighting because when the inevitable day comes that Trisomy 18 takes my littlest love Aiyana from us, I will be able to rest on God’s promise and the fact that I have done absolutely everything I can to love and support her. Everything I can to ensure that my girls know and love each other. And everything possible to be the mom my girls need in this life. I will know, with absolute certainty, that she made a huge and lasting impact on this world. That gives me peace.”
This story was submitted to Love What Matters by Tiffany Leslie Pasillas. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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