By Jennifer Meers Jones ’08

The first six months of pregnancy were a breeze for Chrissy Moore Bernal ’01. Besides putting on weight really quickly, there was no reason to suspect anything out of the ordinary.

One doctor’s appointment in October 1998 changed everything.

During the ultrasound, the technician discovered that the baby girl they had been preparing for wasn’t alone. There was a second baby, another girl who was developmentally five weeks behind her sister (which is probably why doctors had not detected her in earlier ultrasounds).

The girls, Sierra and Sienna, were born the following December, three months premature. While Sierra was small but healthy, Sienna weighed just 23 ounces at birth and spent her first 108 days in intensive care. The doctors’ outlook was grim, giving her just a 10 percent chance of survival. Sienna beat the odds, but as she grew it became clear that she wasn’t developing at the same rate as her twin sister.

“It took us six years and many, many specialists to finally find one who knew what test to do in order to find an actual diagnosis,” Bernal said. “While visiting Texas Children’s Hospital, a visiting geneticist from Belgium happened to be there and had seen a few cases like Sienna. It was a ‘God thing’ that we found the one doctor who was able to give her the primordial dwarfism diagnosis.”

Sienna, now 12, is one of approximately 200 people in the world diagnosed with primordial dwarfism and is the only known case of a primordial dwarf with an average-height twin. With such a rare condition, the Bernal family has fielded questions from people everywhere from the grocery store to the schoolyard all of Sienna’s life.

“After telling Sienna’s story throughout the years, many people suggested I write about it,” Bernal said. “Once Sienna started school and I started to see how others were reacting to her, I decided to write a children’s book about it.”

In the summer of 2010, Bernal published a short biography about Sienna’s extraordinary beginning called Living Life Sinny-Sized. She recently published a children’s book, Sienna’s Locket, the first in a series about adventures that only Sienna can solve because she is just the right size for the situations at hand.
“Sienna has such an amazing outlook on life. I wanted to use her spirit to tell fun and imaginative stories that would help teach children that having something about you that’s different is actually great.”