The first time I met Leah Esquenazi, she was nestled beneath a tangle of tubes and wires in her hospital bed at the Ronald Reagan UCLA Medical Center. Leah was nearly 3 months old, her tiny body inert as a brigade of machines and monitors stood guard behind her, blinking, beeping and humming the score of her vital signs. I think I gasped, although I tried not to.
I had come with Mike, my now-husband, to visit Leah’s parents, our friends Frani and Zev. They had camped out in their daughter’s pediatric ICU room, not wanting to leave her side as doctors bustled in and out, trying to decipher the root of an illness they couldn’t yet identify. Riding the elevator up to their floor, I’d nursed a vague notion of staying strong for our friends, of offering solace and support during what was surely a draining time. But one glance at Leah and the air in the room seemed to evaporate. After a few hugs and hushed words, Mike and I retreated into the hallway, where I gripped his arm and cried.
I couldn’t shake a suffocating question: What if that were us?
I always assumed I’d someday end up a mother, the way Disney princesses end up with their princes and teachers end up with gray hair. But at 29, I’m slowly realizing that the optimal time to “end up” is now. And that has led to another, more unsettling discovery: I’m terrified.
Leah seemed healthy when she was born. Facebook photos show her smiling and giggling, her head carpeted by thick, brown fuzz. But when she was 1 month old, she began to show signs that something was wrong. Her limbs would tense and twitch spastically. She would vomit and spike a fever for no obvious reason. She struggled to swallow and eventually strained to breathe. After eight nerve-wracking months of trips to the ER, countless tests and medications, and lengthy hospital stays, doctors finally diagnosed her with mitochondrial disease, a chronic, often-fatal disorder — with no known treatment or cure — that prevents cells from properly producing energy.
Frani’s and Zev’s lives were turned upside down. They rearranged Leah’s bedroom furniture to make room for a ventilator, an oxygen concentrator and other apparatuses she needed to survive. They hired round-the-clock nurses who helped supervise her schedule of 28 medications. After her tracheotomy, she couldn’t communicate with her voice, so the family learned to bond through a funny face, a rocking embrace, a caress on the cheek.
But Leah soldiered on — and her parents did, too. Amid a storm of unknowns, they drew a tent of love, warmth and cheerful energy around their daughter. They stayed brave.
Here’s what I learned from Leah and her family: Having children takes a colossal amount of courage. Parenting calls for the courage not only to believe that things will work out, but also to say, “I can handle it,” if they don’t.
The process of producing a human being is infinitely delicate and complex, and it’s filled with uncertainty. What if our baby is born with a physical deformity or a developmental glitch? Or, like Leah, with a rare and devastating disease? Could I handle it? How do parents, generation after generation, embark on the story of a new life when so much remains unwritten and outside their control?
Leah died last year, shortly after her second birthday. While her life was short, her impact was big. Condolences poured in from a worldwide network of supporters — tens of thousands of people who had heard Leah’s story on the news or found her Facebook page and were touched by her narrative of courage and hope. These new acquaintances are a kind of extended family now for Frani and Zev, who will continue to raise awareness for children with mitochondrial disease through a documentary and a nonprofit in the offing, the Princess Leah Mito Foundation.
Although Leah is gone, her parents say the meaning she brought into their lives is priceless, and they wouldn’t trade their experience for an easier path. “Knowing her, and what she did in my life, made it worth it,” Frani told me recently. I remember watching the smiles on their faces as they snuggled with her, styled her hair and pressed her small fingers to a paper plate to make handprint turkeys at Thanksgiving, and I’m not surprised at her words.
Maybe that’s the counterbalance that catapults expecting parents past their fears: Love and the potential for joy outweigh any possible risks. Meeting a child Mike and I might have together, I’m fairly certain, is an opportunity I don’t want to miss. Anxiety, heartbreak and all, our friends never wavered in their love for their daughter. I want that, too.
Photo: Frani Esquenazi with her daughter, Leah, last year. Photo by Zev Esquenazi