Teasing his sister, chasing the cat -- and fighting a rare heart disorder like a champ
by Annie L. Schulte

The average American will undergo nine surgeries in a lifetime, but three-year-old Paxton Spencer has already had fourteen life-saving operations.

The son of Columbia real estate agent Freddy Spencer and his wife Jessica, who live in Harrisburg, Missouri, Paxton was born with a rare congenital heart disease called Hypoplastic Left Heart Syndrome (HLHS).

Roughly translated, “hypo-plastic" means a flexible shape that's smaller than normal. The condition, which develops before birth, causes the left ventricle – one of the chambers the heart uses to pump blood -- and the aorta, an important artery, to develop smaller than normal.

“Medically, there is no reason for Paxton to still be here and thriving," mother Jessica confides.  "But God had a different plan."

We tell him that he is a heart warrior.

Every beat of Paxton’s heart is indeed a miracle, but you would never know it looking at him.   He loves to play catch, climb on kitchen counters, antagonize his sister and chase the family cat.  He aspires to ride the bus some day and claims he has a girlfriend.

He’s all boy—and as the large scar on his chest suggests, also a brave young man.  “We tell Paxton that the mark on his chest is his courage,” Jessica explains.  “We tell him that he is a heart warrior.”

After their first routine ultrasound, many pregnant mothers barely make it out the door of the clinic before Tweeting exultations and updating their statuses with gender-captioned ultrasound photos.

The Spencers, however, in stunned confusion, walked out of their twenty-week scan and made it all of back to their car before the somber reality of Paxton’s prognosis settled on their shoulders.

“Freddy and I just stood for thirty minutes and hugged each other,” Jessica recounts.  “We were disappointed, wondering why this had happened to Paxton and to us.”

Jessica went to the Internet with her questions but, with nearly every click, the future appeared even more dismal.  She struggled, despondent over what seemed like a tragedy. 

“But there was a moment,” she tells me, “when I decided that I had to hand this over to God and let Him take control.   We couldn’t do this alone.”

I’m not afraid of losing Paxton to Heaven – I just don’t want him to struggle.

From that point on, they conferenced God in on every decision, charting a course for what they call a journey of faith.

It takes a lot faith just to get past the statistics:  only 75% of children with HLHS live to see their fifth birthday.   Beyond that, the oldest living survivor is an early thirty-something.

When I asked Jessica what she thought about these statistics, she denied thinking about them at all.  “We try not to concentrate on those numbers.   To us, Paxton has every chance to live a long, full life.   We just try to focus on treating him like a normal child and pray for continued medical advances and more sophisticated technology as he grows older.”

Freddy Spencer runs a busy, Columbia-based Century 21 real estate office, while Jessica works in communications for Boone County Electric Cooperative.   Speaking with them is like chatting with old friends.  I almost forgot the levity of our discussion for the warmth and enthusiasm they displayed.

During our conversations, I can’t recall a moment they strayed from optimism.  There was even a post on their Caring Bridge site where Jessica wrote, “I’m not afraid of losing Paxton to Heaven – I just don’t want him to struggle.”

As a parent, these words are difficult for me to read, much less imagine.

Jessica says her fear and her faith do not dwell in the same place.  But the heart she wears on her sleeve can get heavy.   During the course of our discussions, 3 year-old Addison Scott, who also had HLHS, passed away.   A public Facebook page with nearly 4,000 "likes" is raising money for children with HLHS in her honor.

Even a life with hard fought battles and an uncertain future can be

free of fear and full of love.

"I'm just going to go to bed and have a good cry," Jessica told me after hearing the news.

After three open heart surgeries, Addison suffered heart failure.   She was put on a heart transplant list September 14and a series of medical miracles quickly followed.   She received a donor heart two weeks later, and came through the transplant well enough to go home.

But a fever brought Addison back to the hospital October 11.   She died four days later.  Her body had rejected the new heart.

Addison Scott's death hit the Spencers hard.  She had undergone the same surgeries Paxton endured.  And judging by her Facebook page, God and prayer played a key role in her life, too.

Addison was also a F.R.O.G recipient.  “Fully Rely on God” – F.R.O.G – has been the Spencer family mantra and now it’s their cause.   “We wanted to find a way to remind these children and their families to hand their troubles and fear to God,” Jessica says.  

F.R.O.G. – a budding foundation that helps sick children and their families cope with invasive surgery—was born.

The first week of her F.R.O.G ministry, Jessica Spencer sent out fifteen letters of encouragement to parents and fifteen stuffed frogs to their children.  

She wants to spread the word that life is much easier with faith.   Even a life with hard fought battles and an uncertain future can be free of fear and full of love.

Just ask Paxton Spencer—if you can catch him.

-- Annie L. Schulte is a mom and writer based in Osage Beach, Missouri

Photos courtesy of Freddy and Jessica Spencer.  Used with permission.