Parents accept daughter’s rare illness as ‘God’s will’

NASHVILLE, Tenn. — Eric and Ruth Brown believe nothing about daughter Pearl Joy’s life is a mistake.

They say God gave Pearl her bright red hair and wide blue eyes, as well as the genetic disorder that created a cleft in her upper lip and caused her brain’s development to stall in the first weeks in the womb.

“Things didn’t go wrong,” Eric Brown said. “God has designed Pearl the way he wanted, for his glory and our good.”

That belief has sustained the Browns during the past six months, ever since a routine ultrasound revealed that the couple’s third child has alobar holoprosencephaly, a rare genetic condition that’s almost always fatal. A specialist told the Browns she would probably die in the womb and advised them to end the pregnancy early.

It’s one thing to talk about God’s will when life is good. It’s another when a doctor is saying your baby won’t live.

The Browns were forced to consider religious, medical and ethical issues most parents never will. And nobody could make their decision for them.

The Browns never considered abortion. They believe that Pearl is “fearfully and wonderfully made,” as Psalm 139 puts it, and God alone should decide when she lives and when she dies.

Seeing Pearl’s beating heart on the ultrasound also persuaded them to continue the pregnancy, even if the odds were stacked against her.

“If there is a chance, you say yes to that chance,” Eric Brown said. “The only thing I know about parenting is that you say yes.”

So far, Pearl has beaten the odds.

Few babies with Pearl’s disorder make it to term, and of those who do, only 3 percent survive birth, according to the Dallas-based Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. Pearl has a particularly severe form of the condition, which means her brain never divided into two hemispheres.

She turned 11 weeks old Oct. 12, a milestone that the Browns celebrated by lighting 11 candles and singing “Happy Birthday.”

She’ll likely never walk or read or speak. Doctors have given her a year. That doesn’t matter to her parents.

“We didn’t think she was going to be able to breathe,” Eric Brown said. “We don’t care about those things. She is here, and her brain is telling her how to live.”

The living room of their tidy 700-square-foot cottage has been transformed into a nursery with Pearl’s cradle wedged in the corner between a pair of couches.

Beside the cradle is an IV stand and pump that the Browns use to feed Pearl. She’s not strong enough yet to nurse and uses a nasal gastric tube to eat. They also have an oxygen tank nearby, in case of emergency.

On the mantel across the room is a box packed with ultrasound photos of Pearl, along with letters and cards from neighbors and well-wishers from around the world who had read about Pearl on a blog run by a family friend.

For a while, the Browns thought these mementos would be all they would have of their daughter.

Eric Brown said they feared that she would be the “girl who was almost here” and that their other two children, Abbey, 3, and Brennan, 5, would never meet their sister face to face.