Kennedy: Mother's 'fight for my baby'

Kennedy: Mother's 'fight for my baby'

May 29th, 2011 by Mark Kennedy in Life Entertainment

Ooltewah's Jada Daves, a professional speaker, has a storyteller's intuition about periods of conflict and resolution in her life.

For now, the most important story in Jada Daves' life, the welfare of her sick baby boy, is stuck on conflict.

Nineteen months ago, Daves, 41, gave birth to her fifth child, a happy, round-faced baby named Shafer. Shafer fell in line in the Daves sibling parade alongside Shayli, 9; Sharayah, 7; Shanel, 5; and Shaw, 3.

From the beginning, Shafer - or Shaffy as his siblings call him - blew kisses while struggling with life-threatening problems.

"Every time I thought I knew Shafer's story, it changed," his mother said.

During his delivery, there was an emergency C-section prompted by a prolapsed umbilical cord.

At 10 days old, Shafer's labored breathing turned out to be a defective diaphragm requiring emergency surgery.

More testing found enlarged kidneys, which led to a diagnosis of Denys-Drash syndrome, a condition so rare there are only 200 cases in the medical literature. The prognosis for kids with Denys-Drash syndrome is, in simple terms, a cascade of chaos. Kidney failure and cancer are practically inevitable.

This news came against the backdrop of what people called the Daveses' "perfect family." Ms. Daves is a polished professional in a line of work that most people consider an object of stress dreams: public speaking. Her husband, Kevin, 43, is a systems analyst. The Daves family portrait is a bouquet of blonds - it looks like something you'd see on the wall of an Olan Mills studio.

Ms. Daves soon discovered that a sick child is a great equalizer that unplugs the treadmill of modern suburban life. It exposes a vulnerability that is actually useful as a tool for gathering allies in a time of need.

Daves put her career on hold to care for a sick son that doctors gave only a small chance of survival. There was talk of palliative care, of a soft but sure demise.

With that, Daves could feel her maternal instincts kicking in. She realized that to save her son she would have to become an advocate, not just a passive participant in comfort care.

"I've got to fight for my baby," she thought. "I've got to lead the fight."

This is where the story began to turn.

The Daveses pray a lot. They pray when they start a car trip, or sit down to a meal or put the kids to bed. Still, prayer for Shafer's complete healing seemed too much to bite off, so the family prayed for him to survive to age 1.

Denys-Drash syndrome is such an insidious disease that Shafer's best chance of survival was counterintuitive - his best hope was that his kidneys would fail before they became cancerous at about 13 months of age.

The month he turned 1 (remember the prayer), it happened. Shafer's kidneys failed and were surgically removed.

Since October, he's spent 11 hours a day on home dialysis. He sleeps on his mother's lap in a recliner tethered to a blood-cleansing machine. He gets nourishment through a feeding tube.

Shafer's parents were tested to determine if either was a suitable kidney donor. Kidney matching is done on a scale of one to six. A six, a perfect match, is so rare that calculators don't have enough zeros to compute the odds.

When the nurse called with the results, Ms. Daves asked, "Who is the best match?"

"There is no 'best' match,'" the nurse replied. "There is a PERFECT match."

A week from Monday, Jada Daves will lie beside her son in the Rascal Flatts Surgery Center at Vanderbilt Children's Hospital. One of her perfect-match kidneys will be placed inside her 19-month-old son.

Under a best-case scenario, the kidney may last 10 to 20 years. Doctors are careful to say that Shafer's kidney transplant is a treatment, not a cure.

Here's the part of the story that will give you chills. Some of Shafer's older siblings - each under age 10 - have already begun talking about lining up to donate kidneys and extend Shafer's life when they reach the age of consent.

"The Bible tells us that all things work together for good," said Ms. Daves. "I would have never chosen this journey, but we've seen some beautiful things come of it.

"Shafer has made the world a better place. He has deposited so much goodness. My greatest contribution to the world is five children who get what life is about."

TO HELP

Kevin and Jada Daves have health insurance but expect to have about $75,000 in out-of-pocket expenses asso-ciated with son Shafer's trans-plant. To help, visit www.COTAforShaferD.com.


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