Zach’s Story: Little Boy’s Courageous Battle Against Old Age

Monday, March 17, 2008

FRANKFORT, Ky. —  If he’s lucky, Zach Pickard will live past the age of 13.

Zach, now 13 months old, suffers from Hutchinson-Gilford progeria syndrome, a disease that accelerates the aging process when the child is 18 to 24 months old. Children with this syndrome die of heart disease at an average age of 13 after aging at a rate six to eight times faster than an average person.

About 100 cases have been formally identified in medical history, and the odds of being diagnosed with it are roughly one in 8 million. For now, Zach is like any other baby, learning to walk, say words like mama and papa and making his family laugh with funny faces.

With his messy blond hair, big blue eyes and infectious smile, Zach attracts attention wherever he goes. Zach was 2 months old when his parents realized something wasn’t right.

Click here for the full story which includes a link related about Hutchinson-Gilford progeria syndrome

Florida Woman Who Lost Arms, Legs During Birth Works for Answers

Sunday, May 20, 2007
Fox News

claudia-mejia.jpgSANFORD, Fla. — Claudia Mejia cannot give the hugs most mothers bestow on their children. Nor can she grab her 2-year-old son by the hand or place him on her lap. She cannot tuck her 9-year-old into bed or walk him to the school bus stop.

Motherhood for Mejia, 25, was redefined two years ago when a medical nightmare left her without arms and legs. She contracted a flesh-eating bacteria around the time she gave birth to her youngest son, Matthew, at South Seminole Hospital in Longwood forcing doctors to amputate her limbs to save her life.

The horror that began then still unfolds for the disfigured mother, who has pleaded with hospital officials for two years to turn her medical records over — something a judge just ordered.

She and her lawyers believe she either got the infection — “group A strep” — at the hospital or its doctors and nurses failed to quickly and properly treat it. They are suing the hospital and its parent company, Orlando Regional Healthcare System, seeking unspecified damages.

“I just want the truth,” Mejia said.

Orlando Regional, however, maintains Mejia’s infection was acquired elsewhere and that she was treated properly. In 187,000 births since 1988 at the nonprofit hospital system, comprised of seven medical facilities, Mejia is the only reported case of invasive group A strep, Jennings Hurt III, the hospital’s attorney, said.

“Thank God it’s rare,” Hurt said. “The hospital and everybody associated with the hospital have great sympathy for what happened to her. It’s truly tragic.”

Invasive group A strep infects about three people in every 100,000 in the United States each year, said Dr. Dennis Stevens, chief of the Infectious Disease Section at the Veterans Affairs Medical Center in Boise, Idaho. Of those, about a third reach the flesh-eating stage, named necrotizing fasciitis, that often requires amputation, he said. The flesh-eating stage, which destroys muscles, fat, and skin tissue, is fatal in 30 to 70 percent of its victims, Stevens said.

The three days following the April 28, 2005, birth of her son are troubling, Mejia said. After she checked into the Longwood hospital and gave birth to a healthy baby boy at 7 a.m., a fever set in, medical records show.

A nursing document reveals her temperature was high throughout the day, reading 100.6 degrees at one point. Shaking and chills soon followed, and Mejia complained of severe pain in her stomach and a burning sensation when she urinated — all signs of a potential infection, her attorney, Ron Gilbert, said.

The nurses and midwives deny Mejia ever reported any severe pain, Hurt said.

“A 100.6 temperature is very, very, very low grade,” Hurt said. “A person with group A strep with toxic shock syndrome has very high, spiking temperatures. Ms. Mejia’s symptoms were inconsistent with that.”

Diagnosing women with infection after childbirth can be a struggle, Stevens said.

“Doctors have to be able to read between the lines to know if this is the usual pain from just having had a baby or whether there is something else going on,” he said. “One of the hallmarks of these nasty group A strep infections is severe pain.”

As Mejia’s body tried to fight off the deadly bacteria, nurses treated her with minor painkillers Tylenol and ibuprofen, medical officials confirmed.

The hospital’s care was appropriate and reasonable, Hurt said.

The over-the-counter drugs, however, could not fight a disease commonly treated with an aggressive antibiotic regimen delivered intravenously.

The hospital began the process of discharging Mejia the following morning, but her then-boyfriend, Tim Edwards, complained.

“She’s too sick to come home,” he said. Mejia writhed in pain and began to vomit, still with nothing more than mild pain relievers and anti-inflammatory medications, Edwards said.

Doctors finally stepped in the next afternoon and ordered emergency surgery to remove her uterus, but the invasive bacteria had now entered her bloodstream. She went into toxic shock, her kidneys began to shut down and the blood flow to her arms and legs ceased, causing gangrene to set in, records show.

She was rushed to Orlando Regional Medical Center where doctors informed her that she would die if her limbs were not amputated immediately.

“I wanted to die,” she said. “I really wanted to die. I couldn’t go on living without arms and legs.”

It was Edwards, 34, who spent an hour, racing against the clock, convincing her that she still had much to live for.

Edwards recounts his plea to his girlfriend of two years and the mother of his son: “Keep fighting. And when you’re able, marry me.”

Mejia said yes to life and marriage. Doctors amputated her legs above her knees, the left arm above the elbow and her right arm just below the elbow. Eight days later, Mejia and Edwards exchanged vows in the intensive care unit. She wears her wedding band on a chain around her neck.

Two years later, their love and family remain strong.

Edwards, a produce manager at Target in Sanford, begins each day at 4 a.m. He carries his wife, who without limbs weighs 84 pounds, and bathes her. Nine-year-old Jorge, a child from a previous relationship, cooks breakfast for the family — waffles “made with batter, not the kind you put in the toaster,” his mother points out.

At an awards ceremony at Crystal Lake Elementary in Sanford on Tuesday, proud tears streamed down Edward’s face as Jorge, a third grader there, received awards for good behavior and straight A’s.

Family suppers aren’t outdated either.

“We always eat dinner all together. It’s never apart,” Edwards said. “We’re a family united.”

Mejia has learned to brush her teeth, answer the telephone and surf the Internet. She eats by attaching a fork to a fabric band on her right arm above her elbow. She is motivated to walk again with the help of prosthetics.

Edwards asked her to remarry him last year on Christmas Eve.

“Next time she’s going to walk down the aisle,” he said.