By Carmen Fowler LaBerge with Scott Lamb
Pearl Joy Brown
One of the most endearing stories I read this year was about a baby with alobar holoprosencephaly.
No reason to be embarrassed if you don’t recognize this disease. It is rare and comes with such a small rate of survival that you have probably never met a family with a child who has this disease.
Well, meet Pearl Joy Brown, the third child of Ruth and Eric Brown.
Eric and Ruth are a Christian couple living in Nashville. Eric works alongside musicians – David Crowder to name one – on the road helping to run concerts.
Then, Pearl Joy came along. From their blog:
At the Browns’ 20-week prenatal appointment, Pearl was diagnosed with alobar holoprosencephaly (HPE), a neural disease with low chances of survival. Despite a grim prognosis and a doctor’s encouragement to induce labor and end the pregnancy, the Browns opted to embrace life and hope and carry Baby Pearl to term.
Pearl Joy Brown was born on Friday, July 27, 2012 — 4 lbs. 3 oz., and very much alive.
I read about the Browns and baby Pearl through the tear-inducing journalism of Bob Smietana of The Nashville Tennessean. The story subsequently was picked up by the national press, including The USATODAY.
Here is an excerpt:
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.
If the busy schedule of your daily life leaves you with little time to reflect on the real-life application of Biblical truth and Christian ethical principles…then brew yourself a cup of coffee and pull out your Bible today.
Read Psalm 139. Pray a word of thanks to God for the health of children born without rare neural disorders. Then, with baby Pearl Joy – and her parents and siblings – in your mind, affirm the truth and glory of Psalm 139:13-16:
For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
We live in a post-Genesis-chapter-3 world, where the consequences of the Fall effect our soul, mind, and body. But, Psalm 139 was written by a post-Genesis 3 songwriter. Under the inspiration of the Spirit, he affirmed the truth that all humans are created by God. Pearl Joy’s days are “written, every one of them.”
So should we!
Read about Pearl’s days at the blog her parents created for her.
As some of you know, my stepson, Matthew has Apert syndrome. Like little Joy, Matthew lives with physical and development challenges. His surgeries are frequent. His joy in life robust. He too is fearfully and wonderfully made and I cannot imagine life without him.
Grace to you all.