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Old 06-28-2008, 11:36 PM   #1
Gizmo's Mom
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Post Story on Nathan in local paper..

6-year-old might need a new heart if treatment doesn't work
By: BLAIR DEDRICK ORTMANN, The Enterprise
06/29/2008
Updated 06/28/2008 11:20:11 PM CDT
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Photo provided by Ashley Hester

Nathan Powell didn’t attend his kindergarten graduation ceremony at Langham Elementary School in Nederland. He was hospitalized by a heart problem.
A trip to the emergency room with a stomach virus turned into a month-long stay after 6-year-old Nathan Powell was diagnosed with an enlarged heart.
Friday, he was in surgery for a pacemaker-like device called an implantable cardioverter-defibrillator to help his heart.

If the combination of medicine and medical device doesn't work, his doctor said the next step for Nathan might be a new heart.

Nathan's heart troubles were identified when a stomach virus landed him in the hospital June 1, and a doctor realized his heart was beating faster than it should.

The results of an EKG were abnormal, and an echocardiogram showed Nathan's heart was enlarged and beating erratically.

"It just happened so fast. At first I couldn't process it," said Nathan's mother, Maggie Powell. "He was just fine 5 seconds ago; he was eating five things of pudding. He doesn't look sick - he's not pale, there are no dark circles under his eyes. He looks normal."

At that point, Nathan was transferred to Texas Children's Hospital in Houston where medical director of cardiac transplantation Dr. Jeffery Dreyer took his case. He was diagnosed with dilated cardiomyopathy.

"He was pretty sick when he got to us," Dreyer said in a phone interview. "A heart muscle problem may be present for some time as an underlying problem. The body has an amazing ability to overcome some deficiencies, and what is seen as very sudden to the family may not be so sudden."

Nathan, who is from Nederland, has Asperger's Syndrome, a high-functioning form of autism, and the changes in location and circumstances began to upset the normally goofy and laughing child. HOW TO HELP
The Nathaniel J. Powell Benefit Account, No. 700639700, has been set up at the DuPont Goodrich Credit Union and a benefit bake sale and raffle is from 11 a.m. to 2:30 p.m. July 12 at Bruce's Market Basket in Groves. Donations will be used to pay Nathan's medical expenses and underwrite the family's move to Houston.

Cards and letters to Nathan can be sent in care of Maggie Powell, 1907 Holcombe No. 5, Houston, TX 77030.


--------------------------------------------------------------------------------
IF YOU GO
What: Link/bake sale and raffle to benefit Nathan Powell

When: 11 a.m. to 2:30 p.m. July 12

Where: Bruce's Market Basket, Groves




"He started getting agitated," Powell said. "His heart rate was 150. He doesn't understand what's going on. By the time he got into the pediatric ICU, his heart rate was 250."

Nathan was going into heart failure, and the doctors, in order to calm his heart rate, put him into a medically induced coma.

The heart condition often is caused by a viral infection of the heart or genetics, Dreyer said. In Nathan's case, doctors haven't been able to identify a cause.

There was little indication that the problem would develop when Nathan was younger. He had a benign heart murmur when he was born, but an echocardiogram at age 3 showed everything was normal.

Neither side of the family has a history of heart problems, although 3-year-old Troy will undergo testing in case the problems are genetic, Powell said.

"The doctors said if I hadn't brought him to the emergency room, he would have just died," she said. "I didn't know how to take that. He could have been just walking around the living room and died."

Cardiomyopathy is a heart muscle disease that takes different forms. In Nathan's case, his heart is enlarged in such a way that the chambers are bigger than normal so that it doesn't pump as strongly as it should. Symptoms of the disease often mimic other problems, like a stomach virus.

The disease is fairly uncommon, with about six cases occurring in every 1 million children, according to the Pediatric Cardiomyopathy Registry, Dreyer said, cautioning parents not to overreact if their child starts vomiting.

"Parents shouldn't be alarmed and think every child with a stomach virus has heart problems," he said. "Usually, it's going to be a stomach virus."

When medical staff took Nathan out of the coma, his heart rate was too low, and he was diagnosed with tachycardia-bradycardia syndrome. The condition means that the heart alternately beats too fast and too slow. For Nathan, the lower part of his heart doesn't pump correctly.

"His heart rate goes really, really high, then drops really, really low and does it over and over again," Powell said. "When it was going back and forth, he was playing Nintendo DS, just sitting there watching TV."

The implantable cardioverter-defibrillator has the ability to regulate his heartbeat, pacing it up if it goes too slow and applying a shock if the heart is beating too rapidly, Dreyer said. Advertisement

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The device is not really a fix, he said, adding that the 10 or so medications Nathan is taking are the real solution.

"If the medications he takes and will be taking for an indefinite time, if the medications and the ICD aren't as beneficial as we would like, the backup option would be the possibility of a heart transplant," Dreyer said.

A transplant could be needed immediately or never, he added, depending on how Nathan responds to the medications.

"We don't know if he'll get better or if he'll ultimately need a transplant," Dreyer said. "The procedure itself (implanting the ICD), he should recover from fairly rapidly."

The doctors will be monitoring Nathan closely for some time through the outpatient clinic.

"I can't even think about it anymore because he almost died," Powell said. "I've pleaded with them, 'Take my heart, I don't care.'"




Updated 06/28/2008 11:20:11 PM CDT
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