Wednesday, September 26, 2012

Carrying Colin

The mission of Perchable is to spotlight those that make a difference in a child's life.  The amazing thing about this story is that the role has been reversed.  An unborn child is making a difference to thousands of lives and he's been given a voice by his parents, Brian and Joanna Perry.  This is Colin's story.

I met Colin's parents over the phone after hearing about their story on Facebook.  I looked over their blog and I was struck with their ability to turn something so devastating into something that is changing the lives of countless others.

Brian and Joanna's story begins as many of ours do.  They met after many missed opportunities.  She drove by his house every day on her way to school.  She played sports with the same kids he had known since kindergarten.  But one night after high school graduation, they finally crossed paths.  They were fast friends and Brian says, "Eventually, we realized we were meant for each other."  They married in January 2009 soon after college graduation.

Joanna wanted babies right away but Brian, a self-professed planner said, "I had a kind of checklist of life: College, marriage, steady job, house, then kids."  That checklist was completed early in 2012 and they decided it was time to start a family.  Joanna had started her prenatal vitamins months before in preparation for the pregnancy.  Everything was in place.

In late February, Joanna's brother Shawn noticed that the dog was especially clingy with Joanna.  "Jo, do you think you could be pregnant?" he asked.  She took a pregnancy test on February 29th and got the news they had been waiting for.  "To say we were thrilled would be an understatement," shared Joanna.

Their joy collapsed during an ultrasound on April 19th when the doctor discovered their baby had anencephaly.  This disorder, a fatal neural tube defect, blocks a part of the brain and skull from developing.  The doctor told Brian and Joanna that this birth defect was, "Not compatible with life," and that they could choose to carry the baby or terminate the pregnancy.

The answer was clear to Joanna.  "I had no question that I would carry this baby," she said.  But Brian had reservations.  "As a husband, my number one job is to protect my family.  I was selfish.  I kept thinking, let's spare ourselves this terrible pain.  But Joanna was so confident that this was the right thing.  Now I know it was absolutely the right decision."

Almost 90% of families that receive this diagnosis choose to terminate.  They were going against the expected path and they, "hit brick walls with almost every doctor we talked to," said Joanna.  "Doctors would act like I was wasting their time."  She continued, "What if I was a single mom or if I didn't have family support?  I would have felt so much pressure to terminate the pregnancy."

That's when they knew they had to do something to raise awareness about this disorder and to provide a safe place for parents to go if they are facing this difficult path.  Carrying Colin ( was created with the help of Brian's photography and graphic design connections and its reach is expanding daily.  Almost 400 people follow them on Facebook and most of them are people they have never met.  Many of the posts send them love and prayers but most speak of the inspiration Colin has given them.  One in particular said that Colin has "restored her faith in humanity."  Brian and Joanna feel the same.  They know that Colin has helped them to grow in their spirituality and within their marriage.  "God and Colin knew what they were doing," said Brain.

When I asked their plans for the site, they said they wanted to continue to share information and resources they find to prevent this crushing diagnosis.   "Most of our friends are planning to have kids or are having kids.  The risk of having an baby with anencephaly goes down by 75% just by taking pre-natal vitamins with folic acid," said Brian.  They also want to continue the story of their family as it grows and changes.  

Colin is their first son, first child, first everything.  They are both so proud of the lives he is changing. "When, God willing, we have another child and someone asks how many kids we have, I will say two," said Brian. "He is part of our family's story."  They want us to know that Colin is a busy boy at night and seems to get a kick out of Seinfeld.  They can't wait to hold him, even if it is only for a short while.

Thank you, Brian and Joanna, for reminding us that children truly make a difference if we give them a voice.
If you would like to follow their journey, visit

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