Source: NPR / All Things Considered
Stephen Ziel still carries around a recording of his daughter’s heartbeat on his phone. It sounded strong the whole time she was in the womb.
“And the heartbeat’s not supposed to be that strong,” he says.
Not for babies like her. Lydia Joy Ziel was diagnosed with a rare genetic disorder called Trisomy 18 — also known as Edwards syndrome — a few months after Stephen and his wife, Melissa, found out she was pregnant.
“That was probably the moment where it felt like the world kind of shattered on us,” Melissa says.
Most babies with the disorder are either miscarried or stillborn, or die shortly after birth. Melissa and Stephen didn’t know how long they would have with their baby, so they tried to make every moment of the pregnancy count. They picked out a name and started a little book documenting her first experiences.
They captured moments like “Lydia’s first snowfall, Lydia’s first Thanksgiving, Lydia’s first Christmas,” Melissa says. And every night, they read a picture book and a Bible story to Melissa’s growing belly.
The couple also read everything they could find on how to deal with their grief. That included a book by Sherokee Ilse, who personally knows the pain of losing a baby.
“It’s important to grieve and mourn these little ones, to recognize that our lives are different,” Ilse says.
That’s been Ilse’s mission ever since her son Brennan was stillborn decades ago. Ilse briefly held him, but other than that, she feels she and her husband did everything wrong.
“No pictures, no mementos of any kind,” she says. “We literally left with empty arms. I have nothing that he touched.”
Ilse says such deep regret is still the norm for grieving parents. And many feel as if they’re going through it alone, she says, even though this kind of loss is actually common. Roughly 1 in 5 pregnancies ends in miscarriage in the U.S., and every year thousands of babies are stillborn.