A Story of Survival

I have spent a lot of time on this blog talking about the many times someone young has died of cardiac arrest following an undiagnosed issue. From reading my entries on this blog, one might wonder if physicians EVER diagnose cardiac issues which could cause arrhythmia, in advance of a sudden death. Of course, they do.
Jody McBrayer is a really accomplished singer who was a member of the Christian Contemporary Musical Group, "Avalon". He is known for his distinctive and excellent praiseful voice. He has also worked with some other singers. After performing and enjoying great public and critical acclaim with the group Avalon, Jody was diagnosed with hypertrophic cardiomyopathy,(which can be genetic, but can also occur following an infection which could be viral) and it became necessary for him to leave "Avalon" and their fairly rigorous touring schedule. This was unfortunate for all of us, and certainly, it must have been a big shock, and quite an adjustment for Jody and for his family as well. I can't tell you what symptoms led Jody to his doctor and to the diagnosis of hypertrophic cardiomyopathy, but I can tell you what the symptoms might be for many who have been diagnosed with it. NEW shortness of breath in a person who did not experience this before, especially during exercise or exertion is an important symptom. Chest pain during exertion may also be a sign. Fainting during exercise or exertion may also be a sign of Hypertrophic Cardiomyopathy. New fatigue, or being dizzy can also be a sign of this. Lastly, heart palpitations or the sensation of one's heart beating, sometimes rapidly, can also be a sign. Certainly, many of these signs can be simple anemia, or new onset asthma, or other maladies, so it's essential that if you experience them, especially following a cold or flu, that you see your doctor for proper diagnosis and proper treatment. There ARE proper and relatively effective management strategies. There is also a wide range of how debilitating this condition can be for those who suffer from it. I can honestly say that Daniel did not report these symptoms, although in retrospect, I remember his being a little tired after playing soccer on Thanksgiving, just about sixteen hours before our son's sudden unexpected death. Daniel did not have hypertrophic cardiomyopathy on autopsy or when his cardiac cells were examined for genetic indications of hypertrophic cardiomyopathy indicators.
Although not a lot is written about Jody, he remains alive, is married to Stephanie Harrison and he has a daughter named Sarah Clayton McBrayer who was born in 2005. If you get a chance, try to listen to his solo CD, "This is Who I Am". It is possible to buy this album on Amazon, Ebay, Half.com and other sources. Jody is still a solo artist and does occasionally do concerts. I am glad his issue was diagnosed and that he is able to remain with us, and his family, here on Earth. I look forward to his stabilizing sufficiently to perhaps release more of his own music. Jody is a graduate of Liberty University here in Virginia, and makes his home with his wife and family, in a small town which shall remain nameless, within 20-30 miles of Nashville, Tennessee. Hope you're feeling fine and doing well Jody and Family. You are certainly missed by many people who follow the Contemporary Christian Music Scene. Your music makes a difference to many people.....every day.









Daniel heard this music often in our home.

Jody with his wife Sarah, taken recently




Update:  November, 2012         Someone wrote me and asked how Jody is doing.   Judging from his  active use of Twitter and his frequent Tweets, he seems just fine. You can catch up with him and wish him well there.

Of Boys and Butterboats

I am sitting up at 0300 our time, awakened by a slightly disturbing dream. In my dream, Daniel and I are together, he has not passed, and I am telling him off for damaging a tape of the group "Bread". This is an odd dream because this particular interaction never happened. When I awoke, I noticed I had some pretty bad heartburn, which likely fuelled the dream. I can only remember one such interaction such as this. Once, when Daniel was about 11, and it was his turn to load the dishwasher, I had a porcelain European butterboat. It is a porcelain device which allows butter to remain in a cool kitchen out of refrigeration for a time, allowing the butter to get soft enough to be spread thinly. These are often used in England, and I was very happy to have found one here. Daniel had hurriedly placed dishes and pots and pans on top of my new butterboat in the sink, when it was his turn to do that chore, and the porcelain knob off the top had badly broken. I remember giving him a hard time about this and insisting he pay for another one. Ours was a plain white French porcelain, and although these are fairly common in England, they are quite rare here. Unfortunately, no other one was found, and so he never had opportunity. It is one of only two times I remember overreacting with Daniel. I still have the butterboat. It waits for Adam to find the right grinding set to grind the sharp knob portion down, so that the butterboat could once again be used. I don't know how I feel about that now. How could it be that my precious boy who broke the butterboat in his haste to get on to doing something else in his short life, could be gone from Earth now, and the butterboat is still here ? There are so many such contradictions. There are toys, soft toys, tapes, electronic toys, and even the battery to his phone which go on occupying space on Earth and are working now almost three years beyond his instant departure from Earth. I will admit that I still find this inexplicable sometimes.
Daniel, I hope you know that no butterboat, no object here on Earth was ever more important than you, or your feelings. I was disappointed about the butterboat, but I had been trying to teach you accountability for the property of others. I am sorry about taking the time to be upset with you about this. I am left with a few memories of which in retrospect, I wish I had done differently. (Of course at this juncture, I wish I had spoiled you too.) I love you, bug, and I will welcome you in my dreams whenever you can get there.



This is the tape that Daniel had accidentally damaged in my dream this evening. I honestly don't think I have a copy of it anymore.

Earthquakes Versus Aftershocks

Not being a geologist or seismologist, I am at a distinct disadvantage in describing some of the phenomena with which we now live in Central Virginia. Since the 5.8 earthquake here (5.9 if you consider the work of foreign sources and a local university) occured in August, there have been many aftershocks. An aftershock is a "smaller earthquake" occuring in response and following a larger magnitude occurance. They may occur for weeks or even months following a larger quake. We have now had 42 aftershocks since the August quake. These range from about 1.6 to 3.5 or so. These aftershocks can also do damage. Some of the homes which were unscathed by the initial quake have been damaged by subsequent aftershocks. North of here, a road which seemed fine following the initial quake, collapsed following a 2.2 aftershock. The low magnitude or low Richter scale assignment of these aftershocks can be misleading. Since the type of shaking and the way an aftershock or quake is experienced by your building varies, depending upon the depth of that particular quake or aftershock in relation to your building,some strange things can occur.Some people had broken concrete pads in garages following a 1.8 aftershock which was fairly superficial, whereas a 3.2 deeper in the ground, caused nothing for them earlier, even when it came from the same general area. Yes, aftershocks are earthquakes too.
In addition, this area has felt what we believe to be 80 plus aftershocks, about half of which are never reported, or never detected on the US Geological Survey site. (www.usgs.gov) This may be why additional devices are being deployed here.
The concerning thing is that with this many aftershocks we could debate that these may no longer be true aftershocks, but pre-shocks for an event which could be worse than a 5.8 locally, and be a major earthquake for the Eastern Seaboard.
The funny thing is that the aftershocks keep on coming, the animals are still frightened, and most of the time, there is no local news coverage of this. Virginia's nuclear generators are still not up again in the area of the quake. Maybe that's a good thing for awhile.
All I can do is make sure we have disaster supplies, make sure caches of supplies are in several areas of the house. Heavy objects such as mirrors, refrigerators, stoves, pictures, have been well anchored to walls and more importantly to the studs behind those walls. We have locked up fragile glassware, and put some barriers in the pantry so shaken objects wont be thrown across the room again. We try to comfort the animals and give them extra attention when we can. Then, we wait, for all of this to pass.

Happy Birthday JT !

JT is the eldest son of a friend of mine. JT passed overnight one night in 2007, at home, from what had appeared to be an ordinary case of the flu. This energetic soul of a boy  was seven and a half at the time of his passing. He had many friends in church, in his homeschoolers group, and at karate, that even years later, he is sorely missed. He left Earth the year before Daniel, and I like to believe that he and Daniel are friends and that they share cosmic jokes from time to time.
Today, on JT's birthday, let's remember how lucky we are to have our children, whether it's 7 years, 12 years, 38 years or 60 years with them. The world we see is temporary and eventually falls away. Lets be sure to think about, and have some of our soul dwell in the next place also. Happy Birthday JT. You are never forgotten.


This is a link to JT's karate fund.


http://www.jtsfund.com/wordpress/





If JT were still with us, he could help us all make sense of pre-teen angst, as is the subject of this song by someone who looks to be about the age JT would now be.

Tornadoes In Virginia

Photo courtesy of "The Hook" Charlottesville, Virginia (Photo not attributed furthur)








Daniel and our family prepared for, and successfully avoided damage here on the farm, from many tornadoes over his short lifetime. I remember being here on this farm, while it was being built. We were waiting for a particular contractor to come and work on something that day, and we were working on the computer in the rv we had stationed at the animal barn here. We spent a lot of hours watching tv or doing homework while waiting for a particular contractor to build out home. One afternoon, when our two older ones were out, and my husband was at work, Matthew and Daniel and I were here, and we were finished taking care of animals. It was very blustery, and the clouds rolled and made shapes like smoke. It happened so quickly that it looked like a tornado formed before our eyes. We knew we would not be safe in the rv, and so we headed for the house, despite the fact that it was under construction. We wound up hiding at the lowest point in the basement holding a huge unwound roll of silver bubble-wrapped insulation for heating systems over us, until the storm had passed. The animals had simply gone inside the small open barn and were also fine.
Daniel would have appreciated this video. Someone in the next county filmed the tornado which did the damage to the plantation house "Sylvania" which I posted above. The video below was taken on October 13, 2011 in Louisa, Virginia in the Green Springs area. This was an area Daniel knew well.

Tasks in Dreams

Last night was one of those dreams, or perhaps visits which keep me on Earth and functioning positively. Last night,in the early hours of the morning, I dreamt that I was visiting the small town which was some distance from the rural home I grew up in, the the Northeast. It was autumn there, and in our visit, the town probably resembled more the town it was when I was a teen than it looks now. (I know this because two years ago, I took my eldest son Adam back there a couple of years ago on the way back from a long out of state trip.) In this dream, Daniel and I were running an errand. This is interesting because Daniel had never been to that area oreven to that state. In the dream, we were there to encourage a woman who had a small infant who was vomiting repeatedly. Afterward, with our work done, he and I looked around the rainy streets, and tried to decide where to go for lunch.I wanted to go to a do-nut shop for soup, but he clearly stated a preference for Wendy's, and in this dream, there was one there, and so there we headed. Afterward, we were going back to my parent's home they had for most of my life.
What stood out was that people there were cold, poor, and in need of encouragement. I, on the other hand, was joyful because I somehow had Daniel with me, and there was somehow the promise of seeing him again and regularly, even though we are separated by his passing and knew it. In the dream, although I did not see both of my parents, I knew I could, and that later that day I would. It was as if we all agreed to meet to do a good deed somewhere, and to touch base with one another. Daniel is as beautiful and as kind as he ever was. The message was, no matter what I am with you, and our family is always connected. You, who always had such faith in God, will always feel Him near, and will always have us as well.

Daniel loved this song.... He had the original as done by Hugh Laurie in the BBC television series "Fry and Laurie". The original version I think is funnier, and this one has lines changed, but I saw this version on "You Tube" this morning, and it's still funny.

Some Clues to Detecting Potential for Sudden Death in Youth

Clinton High School Girls’ Tennis Coach, Derek Moisan, is seen with one of the school’s cardiac defibrillators. (MATT WRIGHT)
The sudden death of a seemingly healthy 12-year-old boy at a Holden soccer camp this past summer shocked camp workers and traumatized fellow campers.


The article below is reprinted from:

Wednesday, September 28, 2011
Screening for danger
ON THE TRAIL OF HIDDEN CARDIAC ILLS
By Karen Nugent TELEGRAM & GAZETTE STAFF Worcester, Massachusetts, USA



The youth, Joshua D. Thibodeau of Holden, had no obvious pre-existing health condition and his family had completed a medical waiver and everything else required to clear their son for participation in the private program. Tragically, he collapsed and died July 18 during a low-impact drill with 15 other campers.

Joshua’s cause of death, according to the state medical examiner’s office in Boston, was cardiac dysrhythmia complicating hypertrophic cardiomyopathy, an inherited condition that affects approximately 1 in 500 people. Every year, there are similar horrific stories of young people suddenly collapsing and dying during sporting events.

According to the American Heart Association, hypertrophic cardiomyopathy, or HCM, is the most common cause of death in athletes younger than 35, responsible for about one-third of deaths. The heart muscle fibers of those afflicted multiply rapidly, especially during adolescence, leading to an enlarged heart that could be double or triple the normal size.

Cardiac dysrhythmia is a term encompassing various types of irregular heartbeats — from annoying to life threatening. If such a beat happens while a person with HCM is exercising, the electrical system in the heart suddenly fails and a heart attack occurs. Usually those with HCM have no idea they have the condition until disaster strikes.

Can the condition be discovered beforehand via an electrocardiogram as part of a routine physical?

Some say yes, some disagree.

The American Heart Association’s current 12-item guidelines for athletes include a physical exam checking for heart murmurs, taking pulse rates, and blood pressure; and obtaining a clinical history on symptoms of heart disease such as chest pain, fatigue associated with exercise, lightheadedness, and high blood pressure. A family history checking for heart disease and premature deaths from heart problems is also required.

Although recommended by many doctors, the association does not require EKG screening because it is considered impractical, would be costly, and could lead to false positives that might disqualify children from joining sports programs, according to a 2007 updated article in the Journal of the American Heart Association on pre-participation screening for cardiovascular abnormalities in competitive athletes.

A statement last week from the American Heart Association says: “We have a carefully designed tool for recognizing at-risk athletes … if any of the 12 screening elements has a ‘yes’ answer, the participant would be referred for further cardiovascular examination, which may include an EKG. There’s no evidence that adding an EKG to the first line of athletic pre-participation screening would decrease death rates from SCD (sudden cardiac deaths) in young athletes. To determine whether adding an EKG to athletic pre-participation is reasonable, we need more data. A national registry for these events would go a long way to help us understand the true magnitude of the problem, and whether we need a different approach to prevention.”

The European Society of Cardiology, however, and the International Olympic Committee, several years ago changed their recommendations to include EKGs.

But a recent study at Stanford University study reported in the Journal of Pediatrics found EKG screening of young athletes to be ineffective.

The researchers selected 18 EKGs, including eight from patients with normal hearts and 10 from patients with any of six common heart abnormalities related to sudden cardiac death, including HCM. They were shown to 53 experienced pediatric cardiologists to see if they would make the correct diagnoses, and properly restrict or allow sports activities.

The cardiologists correctly identified 68 percent of the abnormal cases, but 32 percent of teenagers with abnormal EKGs were not detected. And of the cases identified as abnormal, 30 percent were normal. Also, 19 percent of patients who should have had exercise restrictions were not identified; and 26 percent who should have been allowed to exercise were restricted.

Dr. Darshak M. Sanghavi, chief of pediatric cardiology at the University of Massachusetts Medical School in Worcester, questions the Stanford study because of the small number of patients, and a lack of information in the published article. The EKGs themselves were not available for readers to look at, he pointed out.

“I was perplexed. And I am not exactly sure what happened there — maybe they were poorly trained cardiologists — because the preponderance of data shows that EKG screening does make a difference,” he said.

Dr. Sanghavi, while not speaking about Joshua Thibodeau’s case specifically, said an EKG should reveal hypertrophic cardiomyopathy, along with several other heart abnormalities. Using EKGs as a screening tool for young athletes, he said, “is a reasonable thing to do.”

“The way we do it now misses those problems,” he said.

“It’s a complicated issue because of costs and other things. And you don’t want to make it so people have to jump through hoops to participate. You don’t want to prevent them from joining,” he said. “But we just can’t sit back.”

Dr. Sanghavi said having access to automatic electronic defibrillators, to shock a heart back to its normal rhythm, would save lives. They cost approximately $1,000 and are relatively easy to use. At the least, he said, they should be available at high school sporting events.

Clinton High School Principal James S. Hastings said while cost resulted in canceling the former policy of having an EMT and ambulance at games, there are defibrillators available.

Joshua’s death, he said, “forced us to do some self-analysis.”

Dr. David A. Kane, an assistant professor of pediatrics at UMass Medical School, and a specialist in pediatric cardiology, acknowledged controversy about whether to include EKGs in pre-athletic physicals.

“These sudden deaths are tragic events that shake the core of a community, and you always want to find out why they happened,” he said.

Dr. Kane said while EKGs can find many forms of pediatric heart disease, they are not foolproof.

“It’s not a perfect test,” he said.

A thorough clinical and family history — with a parent present — during the physical exam is crucial, he said.

“This small (Stanford) study demonstrated that even the most well trained physicians can have a difficult time interpreting a pediatric EKG. This has been one of the concerns that the American Heart Association has raised in its decision to not recommend routine EKG screening in young athletes in the U.S.,” Dr. Kane said.

Dr. Sanghavi expressed frustration about the way medical examiners report causes of death of young people who die suddenly. He said they lack molecular information, such as DNA testing that could determine if inherited conditions such as hypertrophic myopathy are present in family genes.

“There could be siblings. Wouldn’t you want to know if your child had that gene?” he said.

(End of newspaper article) ________________________


NOTE: It is to be remembered that Daniel had no such cardiac enlargement or any detectable abnormalities following sudden death. Still, cardiac sudden death is likely to be multi-causational and if we can detect some of the cases, we can help to decrease the number of pre-teens and teens to whom this occurs.

How Many Student Athlete Deaths are Actually "Expected" ?

                                 This is Wes Leonard, who died after throwing the winning basket.


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Researchers estimate about 90 young, competitive athletes in the U.S. die each year from SCD

by Elizabeth Kopple on April 28, 2011 at 11:43am in
 Prevent Sudden Cardiac Death in Young Athletes        Compumed

http://www.wsoctv.com/health/27241168/detail.html
Teen Heart Screening
Sudden Cardiac Death in Athletes


Sudden cardiac death (SCD) is a sudden (within 12 hours of the onset of symptoms), unexpected death caused by some type of cardiovascular condition. Researchers estimate about 90 young, competitive athletes in the U.S. die each year from SCD. Between 1994 and 2006, death rates from SCD rose about 6 percent/year. In fact, athletes are 2.5 times more likely to die of SCD than their non-athletic peers. The higher the degree of intensity and competition, the higher the risk. Sports with the highest rates of SCD are football (about 30 percent of cases) and basketball (22 percent of cases).


The most common cause of SCD in competitive athletes is hypertrophic cardiomyopathy. In this condition, the left ventricle (the main pumping chamber) of the heart is thickened, making it more difficult for the heart to pump. The heart muscle has to work harder to get blood to the body. When extra demand is placed on the heart (such as during sports practice or competition), the heart may not be able to keep up with the demand for oxygenated blood, leading to dangerous heart rhythms and sudden death.


Structural anomalies of the heart (like abnormalities of the heart valves, aorta or pulmonary arteries) are the second most common cause of SCD in athletes. Some other risk factors include: myocarditis (inflammation of the heart muscle), coronary artery disease and problems with the electrical conduction system in the heart (which triggers abnormal heart rhythms).


Reducing Risk: The Pre-participation Exam


Many schools require athletes to have a pre-participation physical before the start of the sports season. Ideally, the exam will determine if the athlete is healthy enough to participate in a sport, or if any restrictions are needed. However, this exam may not provide adequate assurance for preventing sudden death in an athlete. According to the Minneapolis Heart Foundation, there are no universal guidelines for athletic screening in the U.S. A family/personal medical history and physical may detect some, but not all serious heart problems. Athletes with hypertrophic cardiomyopathy often don’t have any symptoms at rest. So the condition may not be diagnosed, unless there is a family history of the problem. Researchers estimate only three percent of athletes who die from SCD show any detectable risk factors during a standard sports physical.


Jonathan Drezner, M.D., Sports Medicine specialist with the University of Washington in Seattle, says athletes with some types of risky heart problems don’t show any symptoms until the heart is stressed during competition and needs to work harder. Thus, some experts are recommending ECG (electrocardiogram) screening for competitive athletes. This test records the electrical activity of the heart and can indicate an underlying heart problem. If a problem is detected, doctors may want to follow up with a more sophisticated diagnostic tool, like an echocardiogram, which can detect structural abnormalities of the heart.


ECG screening for competitive athletes has been required in Italy for more than 30 years. Researchers say, in that country, the risk for SCD in competitive athletes has decreased by 89 percent. Another study found ECG was able to detect heart conditions in twice as many athletes compared to the standard physical exam.


Drezner hopes that an ECG will soon become a standard part of preparticipation exams for young competitive athletes. Since health can change over time, he recommends athletes be screened upon entering high school and then a second time in a year or two. Athletes who participate in college sports should be screened again.

(This completes Ms. Kopple's article)
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NOTE: It is also to be remembered that Daniel's passing from supposed sudden cardiac death has no prior symptoms, and on autopsy, no coronary artery disease, no malformations of any kind, no thickening or enlargements were detected. Sometimes sudden death occurs as a functional rhythm disturbance without any detectable anomalies, prior to sudden death, and even afterward in a post-mortem.

Alexandra of Virginia

Another One's Gone

Angela Gettis was, by all reports, a model student and a cheerleader who was cheering for her school, George Washington Prep High School, in the Los Angeles Unified School District area. Angela was only a sixteen year old high school sophomore, but she was already a member of ROTC (Reserve Officer Training Corps) and planned to go to college in order to study forensic science. Yesterday, she was cheering at a game, and the game was just about over, and she and passed out. She was briefly revived, but then proceeded to go into cardiac arrest. CPR was begun by the coaches, the ambulance came, but she was pronounced dead at a local hospital three hours later.
The writers of the articles reporting this say that "This is a terrible loss for the community and for her family", and indeed it is. They have no idea, and of course, I do. My family and I send deepest condolences to the family of Angela Gettis, today,and for all the difficult days to come. I do hope they find their way to this blog, at some point in the future. Of course, an autopsy is planned, but physicians already believe this will be logged as a "sudden cardiac arrhythmic death" just as Daniel's was, almost three years ago now.
The official word is still that Sudden Arrhythmic Death Syndrome is rare, yet all the kids I profile here on this blog, and all the parents I have met who tell a similar story to mine, would seem to indicate that this is simply not so. Why are we in America, not requiring baseline EKGs for all kids age 12 and older, especially before PE class participation or participation in sports ? AEDs are popping up in more places than ever. Was an AED used on Angela ? Why doesn't every pediatrician in the US discuss the potential signs and symptoms, and the potential LACK OF SYMPTOMS, and simple need for screening for all children and teens for SADS ? Godspeed Angela. Please tell Daniel I love and miss him very much.

UPDATE: As of October 8,2011, Angela's cause of death remains inconclusive and is awaiting a toxicology screen. This implies that as in our son Daniel's case, no physical cause for sudden cardiac arrest was seen on autopsy.