When Rach and I found out we were pregnant again, I was so excited. I couldn’t stop thinking about this collection of cells that were rapidly growing inside of her to create a life. Not just any life, but the life of our new child. Our baby. It was like the start of the Big Bang – a life’s worth of energy (passion, heartbreak, discovery, joy, potential, and on and on) ready to burst into existence. 

Here is a fun moment. We were sitting on the tiled floor of our bathroom, watching our daughter Shyla play in the tub, when we got the email notification. “Your results are in!”, the header read. Shyla moved her boat across the bubbly surface as our heart rates accelerated. What a millennial way to find out the sex of our baby. An email…  

Rach and I could sense each other’s excitement. Opening that email would give us a glimpse into our family’s future. It would allow us to jump deeper into a parent’s imagination of wondering who our tiny baby (the size of a cherry!) would become. Not that it matters in terms of how much love or expectations you put on them, but there is amazing fun in finding out the answer to the question: girl or boy?  

Memories like this – ones that live on the other side of a chasm between what we knew then to what we know now – seem to exist within the soapy bubbles floating off the bath. A glossy shine tints them. They are trapped within a fragile moment. 

I think about us giggling, “no you open it”, “no, I can’t, you open it!”, the phone being pushed into my hand, Shyla confused at the chaos but loving every moment of it, the memory of all of this starting to float farther away, the bubble drifting off the tub, me taking a breath and clicking the email, an animation, confetti, me now looking up at the memory as the bubble rises higher and higher, I scream out of joy, Rach grabs the phone, she laughs in excitement, we hug, it’s a GIRL, Shyla is going to have a sister, we are all laughing, the memory feeling farther and farther and us becoming more and more distant to it until… 

We got confirmation that our baby girl has a rare genetic disorder called Trisomy 13, or Patau Syndrome. This means that she has an extra chromosome 13 which can lead to severe effects on neurodevelopmental and physical outcomes. What we’ve been told is that babies with Trisomy 13 have an average life expectancy of 7-10 days, with only about 5% living to 1 year. 

To put into words how this diagnosis has made us feel is truly beyond my capacity. And while this has been of course a sad time, I want it to be clear that sadness is only a piece of this complicated feeling. This baby in some ways has brought us more joy than we thought was possible. To be honest, my brain hasn’t found a way to pinpoint the feelings that fall somewhere between grief, hope, love, challenged, joy, and despair on the spectrum of emotions. We tend to place our emotions into categories, loosely labeled “good” and “bad” ones. Yes, the thought that I will outlive my daughter is devastating and thinking about the physical and intellectual disabilities she will likely have is hard. But I get to hopefully meet another one of my children, marvel in her beauty, and provide her with love, care, and support. She is very alive right now, just ask the inside of Rach’s uterus as she gets daily internal kicks from our little one. 

An innate parental need to protect your child at all costs is up against the grim statistical reality. And of course, our daughter is not a statistic, so the intense desire to meet and bond with our new little girl is still burning bright as well. She is still here and growing within Rach, so we want to give her every opportunity to thrive and feel the full volume of our love. 

The truth is that we don’t know whether we will get hours, days, months, years, or nothing at all with her. We don’t know what kind of support she will need from us when she’s around. All we know now is what is in our control: the love that we can send her way, the information we can gather to best prepare ourselves for her arrival, the mental and physical care we need to be our best selves to support her. 

I’ve been grappling with a philosophical question that feels all too literal: how do you measure a life? I’ve concluded that if her life is one of love, of people fighting tirelessly for her, of comfort, and ultimately of impact on her family, her life will be full, no matter how long she is here with us. 

I hope to continue to share how we are doing as a family over the coming months. I hope to provide more insight and information on the condition that our baby has. I hope to distill the myth that babies with Trisomy 13 are “incompatible with life”, an old medical phrase that bluntly means, “your baby isn’t worth the fight”. I hope to re-imagine the Big Bang with a fresh perspective. A different new-life-in-the-making than I originally thought, one with the capacity for love, meaning, memory, and purpose.