VIRAL MYOCARDITIS

AND

STACI

On Friday March 11th, Staci came home from school feeling tired and midly sick. On and off for the past few weeks or so, Staci had been taking a few cold medicines for minor nose and throat irritations. So naturally, when Staci came home from school that Friday, we thought she had a mild case of the flu. She proceeded to rest the entire day at home on Friday. One thing I (her mom) really remember vividly was Staci’s dedication. As she laid down in her bed when she got home that Friday morning, she asked me to wake her up in an hour or so because she had two tests and a project to work on.

Then, later on Friday night, Staci felt somewhat better or so we and everyone else thought. Staci asked everyone to not come over because she thought she was contagious with the flu and she didn’t want anyone to get what she had. Staci continued to rest and she tried hard to get better. Then, Saturday morning March 12th, she seemed to be doing OK but was very tired and seemed like she still just had a mild case of the flu.

She woke up on Sunday morning around 7:30, March 13 with a tingling sensation in her fingers and toes. She was tired and pale. We put her into the car and took her to Florida Hospital in East Orlando. I drove her up to the ER emergency entrance where she was brought back to the ER by personnel that worked at the hospital while I (her mom) parked the car.

When I arrived inside the ER after parking the car, I was brought back to a quiet room and was told that Staci was not breathing. However, they said they managed to revive her and that as soon as she was stabilized, that I could go back and see her. I used this time to pray, call my immediate family, and try to get my composure. My husband was at home with our son, Kevin. Soon, the ER personnel came back a few minutes later, and they told me the fateful news. Staci was not breathing. Initially, they had managed to get her heart beating but unfortunately it stopped again. They said that I needed to come back and talk to her. As her mom, I went back to the ER room nervous but assured that Staci would breathe on her own and she would be fine. I was determined to bring my girl home.

Much to my shock, I walked back to a lifeless girl hooked up to a breathing machine with ER personnel performing CPR. I immediately cried out to my savior asking him to bring her back to me, begging him to bring her back, and crying out to Staci wanting her to breathe….

From this point on, we tried desperately to ask God to let Staci start breathing. We prayed, cried, and brought in many people to talk to her and try to bring her back to us. The emergency room personnel stood around her bedside, along with all of us, holding hands and praying trying to bring her back. Nothing worked. I knew that this moment, this fateful moment would change the ER room and ER personnel forever.

So, in an instant, our life changed dramatically. We were upset and worried but we trusted that Staci would just bounce back; 16-year-old kids just didn’t go to the ER, stop breathing and then die!

However, God had a different plan for Staci and us that morning and the rest of our lives on earth. Staci passed away at 8:58 AM on 13 March 2005, less than 30 minutes after we arrived at the ER. We are still shocked that as soon as we arrived at the ER she passed away, and within 30 minutes, our lives along with so many others, was permanently changed.

Viral Myocarditis – I wish I never heard of this condition. This medical condition is horrible. Myocarditis, or heart muscle inflammation, is usually caused by a viral infection that attacks the heart. This disease is characterized by enlargement of the heart and poor function, leading to heart failure. Myocarditis causes death in 30-70 percent of children, depending on their age (worst in younger children less than 1 year of age). Diagnosis and treatment of Myocarditis has been slow to develop. Using scientific methods, the diagnostic approaches are now being developed and this will allow specific treatments to be invented, leading to better care and survival.

We don’t know where Staci got the virus. The virus is similar to a flu virus where you just get sick and you don’t know why. Some people are exposed to the virus and they never get Viral Myocarditis, others do. Research is still being done on this deadly condition.

We have learned that Staci’s heart was severely damaged very quickly. The heart muscle does not “fix” itself. Once it has been damaged, it cannot be repaired. We have been told that little could have been done as much four days before she passed away.

Her family has been working closely with doctors to obtain as much information about Viral Myocarditis as possible. We do know that Viral Myocarditis diagnosis is increasing and more people are being diagnosed with it. However, it is still a rare condition. One percent of all Americans get the virus.

Staci’s virus was further diagnosed as “Coxsackie B” - the most common virus that causes Viral Myocarditis. It seems that almost every doctor we talk to state that it is very difficult to detect and that the symptoms mimic so many other problems.

A portion of the donations received will help support the laboratory of Jeffrey Towbin, MD who is a leader in research on Viral Myocarditis. We are also planning on supporting other Viral Myocarditis medical facilities but Dr. Towbin is one of the first one’s we discovered who has a lot of knowledge and experience with Viral Myocarditis.

Other than flu like symptoms immediately preceding Staci’s death, there were no outward signs that anything serious was wrong. One thing that we learned after Staci’s death was that Viral Myocarditis has a remarkably high mortality rate. However, we are confident that further research will lead to better treatment and prevention of this group of diseases, thereby decreasing the number of families who will experience a devastating loss like ours.

To eliminate other families and loved ones dealing with the loss of a loved one from Viral Myocarditis and other related heart problems, a portion of the funds from The Staci Stephens Fund will be given to medical facilities to further research. Additionally, we would like to provide funds to people that have been affected with viral Myocarditis.

PREVENTION

Many cases of Myocarditis caused by infections can be avoided by practicing good hygiene, especially washing your hands often.

CLICK HERE FOR ADDITIONAL INFORMATION ABOUT VIRAL MYOCARDITIS AND THE RESEARCH THAT IS BEING DONE:

To learn more, please visit the following web sites:

• http://www.texaschildrenshospital.org/
• http://cms.clevelandclinic.org/childrenshospital/?id=82
• http://www.emedicine.com/PED/topic1534.htm
• http://www.ahealthyme.com/article/gale/100083735
• http://www.carditis.net/
• http://en.wikipedia.org/wiki/Myocarditis

THE VIRAL MYOCARDITIS FOUNDATION

Candace Moose - a Myocarditis survivor, founded the Viral Myocarditis Foundation! The foundation’s ultimate purpose is to save lives! This foundation works with physicians and scientists to research this horrible disease and to try to raise awareness and hasten progress in understanding more about it. Please learn more about this foundation at:

http://www.myocarditisfoundation.org/

For more information about Candice who also received a heart transplant due to her myocarditis), please refer to:

http://thegratefulheartdiary.com/

PAPERS ABOUT VIRAL MYOCARDITIS

• How Viral Infections Fit into Myocarditis
• Detection of Viruses

If you would like to donate to “The Staci Stephens Fund, Inc.,” a tax-deductible 501(c)3 Non-Profit Organization.

To donate via Paypal, Click Here:

The following email was received regarding Bactrim

Bactrim Warning http://briandeer.com/septrin/bactrim-effects-1.htm

I had an allergic reaction to Bactrim and I have never been allergic to anything, ever!! I came across a story that sounded very much like Staci's and the cause of death was recorded as Viral Myocarditis when in fact it was the Bactrim that brought on the reaction. I was prescribed the generic medication Bactrim that is marketed under many names, including Bactrim, Bactrim DS, Sulfatrim, SMZ/TMP, Septran, Septrin, Septra, Septra DS and co-trimoxazole, etc. The doctor asked if I was allergic to Sulfa based medications, and I did not recall ever taking any since I am rarely ill, just things like Amoxicillin or Z-Pac for the occasional sinus infection. So, I said, "No," and that I have never been allergic to any medications. I took the tablet at 4pm and within minutes felt like tiny insects were biting me all over my body. THIS WAS ONLY AFTER ONE TABLET!!!! You must be monitored by a family member (or friend) when taking this medication. DO NOT LEAVE YOUR CHILDREN UNATTENDED IF THEY ARE TAKING THIS!!! But in my opinion, I would consider it poison and never allow a friend or family member to take it. Be aware that the allergic reaction could be fatal. You can learn more at: http://briandeer.com/septrin/bactrim-effects-1.htm ... this site is worth passing onto your friends and loved ones. I want to note that I have never been allergic to anything in my life (other than an occasional sneeze due to pollen). Most importantly, you may have successfully used Bactrim in the past and have the same reaction that I did (or worse) on a subsequent use. Please forward this message on to people you care about...it could save a life. There have been many reports of very serious complications (as bad as it was, consider my reaction mild when you read some of the other reactions!!!) including death. 

Please be careful when taking Bactrim. For further information, please see the following web site: http://briandeer.com/septrin/bactrim-effects-1.htm

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