In early 2017, Brooke and I lost a baby five months into pregnancy. It began as an ordinary ultrasound in an ordinary examination room, but when they couldn’t find a heartbeat, we were rushed to a doctor who frantically rubbed the ultrasound wand over her belly.
It seemed a lifetime before we heard the words, “We can’t find a heartbeat. I’m so sorry.” I’ve never seen Brooke’s face so white, felt tears so strong, or experienced sadness so profound.
“What are the chances?” I thought to myself as we walked to the parking lot in a haze of confusion and despair. We got in the car and drove to the hospital where Brooke would have to do what seemed impossible: perform a stillbirth of our child.
We entered labor and delivery without a car seat in tow, knowing we’d be leaving empty-handed. Although on the same floor, they keep the parents celebrating life separate from the parents grappling with death. The distant sound of a newborn’s cry became a stark and painful expression of inescapable heartbreak.
A year later, we learned Brooke was pregnant with Henry. On her birthday, we found ourselves in the same ordinary examination room from the year before. The same room with its beige walls, stale, cold air, and overwhelming scent of rubbing alcohol. This time, we were there for a routine 20-week ultrasound. This time, the doctor found multiple tumors in Henry’s heart.
I’ll never step foot in that godforsaken room again.
They monitored the tumors in Henry’s heart throughout the pregnancy. We were told the tumors could be due to a variety of things, but the most likely cause was tuberous sclerosis complex (TSC). We googled TSC and cried. At our next appointment, they told us not to google TSC anymore.
Henry joined our family in the early evening of a long day. As soon as Brooke held him, he couldn’t stop staring at her. Their connection was instant. Henry was looking for her when his brothers and sister came to hold him for the first time and still looking as they whisked him away to the NICU to perform what seemed like endless tests.
Three days after he was born, Henry underwent an MRI to check for tumors in his brain. When the doctors led us into a small room to reveal the results, the solemn look on their faces broke the news. They’d found tumors.
The official diagnosis was TSC, a rare genetic disorder that causes seizures, learning problems, and intellectual disabilities. Heartache and uncertainty put us on our knees. The medical staff gave us the room. Another forgettable, unforgettable room where we got up, wiped away our tears, and steeled ourselves against the unknown.
Eleven days after he was born, we brought Henry home and transformed our bedroom into a makeshift NICU. The tumors in his heart should go away over time, but the tumors in his brain won’t and may become life-threatening. There’s a chance Henry will live a somewhat normal and healthy life; there’s a chance TSC will cut it short. It’s impossible to know.
My son’s life is up to chance.
I’ve always had a complicated relationship with chance. I spent the first few years of my life in foster care and lived my post-adoption childhood in constant fear of being abandoned.
I was angry at my biological parents for putting me up for adoption and mad at myself for not being worth keeping around. When I was 15 years old, I met my birth mother. I was determined to ask her why she’d given me up, but for some reason, I didn’t. I never did. Somewhere along the way, I’d come to learn life is as much about the chances one gives as the chances one takes.
When she passed away in 2015, with my brother and me at her side, I no longer felt like she’d given me up. The last thing I ever said to her was, “Thanks for the chance, Mom.” I was given a chance by a woman who wanted her son to avoid a harrowing life.
A mother who wanted to give her child a chance.
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