Baby stricken by rare disease

10-month-old boy has undergone three open-heart surgeries.

August 20, 2010 

Joy Akers remembers watching TV shows about rare and possibly fatal medical conditions. It was a mindless diversion, a fate she believed would never happen to her own family.

Until it did.

Ten months ago, after the birth of her second child, Logan, Akers' world turned upside down.

At three weeks old, Logan nearly died because of symptoms related to a congenital heart defect called Shone's Syndrome. It's a condition that rendered the left side of his heart barely functional.

"It's a constellation of problems affecting his heart," said Teresa Schill, Logan's primary care physician. "There are several defects, not just one."

Logan had been sick for a few days, so Akers brought him to see his physician, who said he seemed extremely dehydrated and needed to be hospitalized.

Once at Mercy Medical Center, tests revealed that Logan needed immediate medical attention from specialists.

"It was determined he needed to be medi-flighted to Valley Children's Hospital in Madera," Akers remembered. "When we got to the hospital, we knew something was severely wrong because the room was full of white lab coats."

Many of the doctors had never seen anyone with Shone's Syndrome before, Akers said.

Shortly after Logan was admitted to the hospital, a doctor explained to Akers that her baby would need open heart surgery in the next 36 hours.

"You don't want yourself to be going through this," Akers said, "but you also don't want this to happen to anyone else."

That was the first of three open-heart surgeries he's undergone.

His most recent surgery was Aug. 2, and that was to try to replace his mitral valve with an artificial one.

It didn't work.

Because Logan's heart is so small, none of the artificial valves available would fit him, so instead, surgeons cleaned out his mitral valve.

Now, the family is engaged in a waiting game to see if Logan's mitral valve grows large enough to fit the available artificial valves, said Paula Akers, Joy's mother.

If the surgery doesn't help, Logan will need a heart transplant.

And if that happens, his case will be transferred to the Lucille Packard Children's Hospital at Stanford.

The medical center then would need to determine if Logan is a good candidate for a heart transplant.

Because of Logan's heart condition, he also has suffered some lung damage, Akers said, so the hospital would need to determine if he's even a viable candidate for the surgery.

According to Schill, fluid has filled up in Logan's lungs because of blockage in his mitral valve, damaging his lungs.

"It's absolutely tragic," Schill said.

After that, the only other option is a heart and lung transplant at the Children's Hospital in Philadelphia.

According to the hospital's website, its medical team has performed the double surgery on 25 patients.

Mark Akers said the success rate isn't very high.

Joy said she wonders if it would even be worth it to put Logan through such trauma.

"You'd rather see this on TV or in a movie because in a movie some medical miracle may happen," Akers said.

But even if the family gets an OK from the Palo Alto hospital, they are not guaranteed to find a donor, said Paula, and finding a donor that young is rare.

"We need lots of prayers and a miracle," she said.

To look at Logan, it's not at all noticeable that he has congestive heart failure.

A grin seems to be tattooed across his cherubic face at all times. He's constantly giggling and playing with anything that catches his attention.

When his mother lifts up his shirt, then you see his scar -- a long reddish-pink line that stretches from the top of his chest to his lower abdomen.

"You would never know there was anything wrong because I take him to the doctors and he's laughing and smiling," Akers said, "but he has heart failure."

Joy, who works in the cardiac department for Mercy doing medical billing, said she and her husband Kirk Stokes are planning to move in with their parents at the end of the month to save money and also to have more helping hands around them.

Akers said she hasn't been able to work much since Logan was born because of his condition. Her husband is a stay-at-home father.

As the months multiply, so do Logan's medical bills.

Whatever decision is made for the baby, the family faces almost insurmountable medical bills. So, to help reduce the economic blow to the family, Mark set up an account at Citibank in his name for people to make donations to support Logan's medical care.

People can make donations to account number 40012602047 in the name of Logan Stokes c/o Mark Akers.

That would be a heartfelt response to a little boy with only half of one.

Reporter Jamie Oppenheim can be reached at (209)385-2407 or joppenheim@mercedsun-star.com.

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