Parents like to hang onto their kids. They’re sentimental that way.

And so I cannot imagine the utter helplessness, frustration, and grief Cieran and Orlaith Staunton must have felt when their 11 year-old son Rory became critically ill and later died from a scratch on his arm.

What the Queens, New York, couple didn’t know is that Rory’s scratch from basketball practice had become infected with streptococcus pyrogenes bacteria, and over the next few days would turn into Toxic Shock Syndrome. TSS is an acute form of sepsis, an infection that makes its way into the blood and soft tissue; and a common cause of death in hospitals.

On March 29, 2012, the morning after Rory’s vomiting and leg pain began, he had a temperature of 104. His parents took him to their pediatrician, Dr. Susan Levitzsky, reports said. Rory could barely walk. He vomited and his skin became blotchy when pressed. But the pediatrician told them the scratch had nothing to do with it. And she sent them home.

Later that day emergency room doctors misdiagnosed the boy’s worsening symptoms as the stomach flu. Once again the Stauntons went home, this time with instructions to give him Tylenol.

When they called Dr. Levitzky’s office the next day she prescribed “crackers and fluid.”  And as per her advice, they returned to ER, their son in so much pain that it hurt to be touched.

Rory Staunton died two days later in intensive care.

Why had none of the doctors recognized the symptoms of septic shock? I can’t help but wonder if the Staunton’s pediatrician, or the hospital, would have been penalized for admitting the boy for further testing. Was he not sick enough?

I experienced toxic shock symptoms in college. I had recently read a magazine article about a young woman who died of TSS caused by tampons and immediately understood that my “flu” probably wasn’t the flu at all. I was lucky. I found out in time.

Remember John Grisham’s novel, The Rainmaker? The insurance company preyed upon poor, working people who forked over monthly premiums year after year. But they never paid a claim upon the first request. Company policy, as it turned out. And when a critically-ill young man needed life-saving treatment, they didn’t pay at all.

You would think that with malpractice lawsuits on the rise it would have made sense to check Rory out completely.

In spite of their heartbreaking loss, the Stauntons are using their experience to help others. They want to instate a law – Rory’s Law – that will require doctors to discuss children’s blood work before the doctor releases them.

I never lost a child due to malpractice, but I did have a medical scare.

One Saturday morning in November I bundled my 21-month old son in his snowsuit, still asleep in pajamas, and put him in his car seat. And then together with my husband and three-year-old, we drove out of the mountains toward the Denver foothills and the art show where I planned to exhibit that weekend.

After setting up, I unbundled our little one, took off his sleeper, and got ready to change his diaper. What I saw under all those layers horrified me: maroon, black and purple splotches covered his arms, legs and bottom.  Worried that someone might think I beat my child I hustled him into a clean diaper and zipped him back up. We ditched the paintings, called the pediatrician, and headed back into the mountains, toward home.

The forty-minute drive lasted an eternity.

The kid seemed fine. No fever, cold, cough or vomiting. But the bruises kept coming and our doctor didn’t know why.

It could be a number of things, he said. The words hemophilia or meningitis numbed my brain.

By the time we headed east toward Denver again,  Children’s Hospital was expecting us.

I worried myself all the way to the city, but my little boy had no complaint.

The doctors at Children’s examined every inch of his body. They drew blood and watched him play with toys in the waiting area, and  for the rest of the day we waited as the test results came back negative one after the other.

By the end of the day we’d learned that our son had had a reaction to a virus. The doctors called the bruising “purpura.” His capillaries were leaking red blood cells. Now I know that it was probably Henoch-Schonlein Purpura (HSP), a condition that usually occurs in children ages 2 to 11, more often in boys than in girls, according to medical sources. A protein called Immunoglobulin (IgA) is deposited into the blood vessels and starts an immune reaction, usually after a bacterial or viral infection. But it can also happen in response to foods, vaccinations, insect bites and a number of other things.

We didn’t hear about HSP that day. Only that our son would be fine. We just had to wait out the bruises.

For three days I watched the colors surface on his skin and then break up and dissolve. I am grateful that our son was diagnosed that day by caring doctors. I am glad our pediatrician didn’t tell us to take him home and give him Tylenol.

Managed health care in America was instituted under Richard Nixon, a more treasonous act than the Watergate scandal, in my opinion. Profit-driven to provide the fewest services possible, why would they want doctors to get to the root of a patient’s problem during the first visit? It costs too much.

Twice I’ve had a broken ankle and twice I’ve had to go back to urgent care for a simple cast; somehow those X-rays defy interpretation the first time around. My son had to visit two ERs before he got somebody to put a cast on his broken elbow. We were billed by both hospitals, but the insurance company thought only one deserved to be paid.

Parents need to stand their ground and not be intimidated when dealing with doctors.

They also need to pay attention to their children’s bodies, and know what is “healthy” for them on a day-to-day basis.

Do you know when your child’s breath is normal and when it smells “sick?” If you do, you’re “in tune” and will be able to tell in advance when they are coming down with something so you can keep them home, push fluids and rest. You’ll be watching for signs and symptoms.

When you press your lips to their forehead, can you tell if they have a fever? What about the frequency and appearance of their bowel movements? Do you know what “normal” is for your child? All of these things clue you in to your child’s health.

My kids’ eyes always told me when something wasn’t right. They  looked cloudy instead of bright.

Rory’s parents were on top of it. They did all the right things. And I am very sad for their loss. I only hope their goal of bringing “Rory’s Law” to fruition succeeds. No family should lose a child because a doctor did not think they were sick enough. FFG

http://shine.yahoo.com/parenting/parents-11-old-died-sepsis-hospital-sent-son-183800609.html