Joy turns to fear after San Diego couple learns about baby's rare condition

Posted at 5:43 PM, Sep 29, 2016
and last updated 2016-09-29 20:57:19-04

(KGTV) -- At first glance, the Gleeson family looks perfect, like something straight off a magazine cover.

"What's that? I don't know. Is that a princess wand? Yeah!"

That’s Nicole Gleeson with her 2-year-old daughter Parker Rose reading a book together. Happy, beautiful, and healthy. But it wasn't always that way.

“Well, I remember the day. We were at the house and we got a call from the doctor," says Brent Gleeson thinking about the frightful past. 

Let's backtrack a bit. Nicole and Brent, happily married, and their young son Tyler is about to be a big brother.

"Of course every family is overjoyed with the thought of having a new baby," says Nicole.

Nicole was 15 weeks pregnant when they got the news.

"It's pretty much the worst thing you can hear as a parent," Brent interjects.

Their baby girl had a birth defect. A serious one that affects only 1 in 3,000 babies.

"That's when we found out that our baby has Gastroschisis,” adds Nicole.

Gastroschisis. The baby would be born with her intestines outside the body. So serious....

"Before you even know what it is, you meet with a grievance counselor," says Brent shaking his head.

For almost six months the family hoped for the best and prepared for the worst. It took its toll, even on Brent a former Navy SEAL who's had his share of tough experiences.

"Oh, I was crying like a baby,” says Brent. “This is your children we're talking about here."

The day came, and little Parker Rose was born. But...

"She immediately went into surgery,” says Nicole beginning to cry. “I didn't get to hold her, I didn't get to spend any time with her."

Heartbreak and fear for a young mother.

“It was horrible not knowing. Not being able to hold your child."

But before you tear up too, Parker Rose is pretty much your average two year old. She could care less about the big camera in the room and interrupts when she pleases.

"Come sit with Mommy,” says Nicole. “I need to get two babies," replies Parker Rose trying to find her two favorite dolls.

Today is a good day now two years removed. But there were 25 days of uncertainty. 25 days of fighting for baby Parker Rose. And a month where living at the hospital became the new normal for the Gleeson family. That’s when Nicole found the March of Dimes, found a community, a family.

“If you would have told us 2 1/2 years ago that we would be the March of Dimes Ambassador family we never would have believed you,” says Nicole in awe of her happy family today.

Parker Rose is alive today because of the research and funding raised through the March of Dimes. And the Gleeson's are paying it forward.

“We never thought this would be our journey."

10News is a proud sponsor of  The March of Dimes. This Sunday is the Signature Chefs and Master Mixologists Gala at the Del Mar Race Track. The Gleeson family from Rancho Santa Fe has been selected to be the Ambassador Family for this year’s gala. It’s an honor that comes with a tremendous fight.