Then, he started fainting and not waking up. Aid cars were called. We discovered that his heart was going into something valled ventricular fibrillation. He was defibrillated on a trip to Children's Hospital in Seattle.
At the hospital he was fainting when he was in the hospital bed. Wires were hooked up to him and they were checking his hear. They could see that his heart was doing weird stuff -- ventricular fibrillation -- but they could not tell us why.
The cardiologist hooked up an external pacemaker and my brother stabilized. But, the doctors did not know why he was having these problems. Finally, a resident came in with an article describing a newly discovered genetic problem called Romano-Ward syndrome that was associated with Long QT.
The cardiologist measured my brother's QT interval -- he actually used calipers -- and found a long QT.
The doctor inserted a pacemaker -- it went into my brother's abdomen because it was quite large -- and sent us all home.
But, our journey with Long QT was just starting. We were asked to all have ECGs and it was discovered that My dad, my sister and my new little brother -- less than a year old-- and myself all had Long QT.
Not much was know about the disease -- it was 1975 -- and we were told to watch for fainting. None of us had fainted except my brother and my dad had spent 21 years in the navy and served in Vietnam for a few years and even had a Purple Heart!
The doctors and our family reasoned that the rest of us would be OK. We were the first Long QT family the hospital had ever seen.
They were wrong but we would not know this for another 18 years.
In that time frame I climbed Mt Rainier, became a volunteer fire fighter- even taught advanced first aid and CPR -- and even responded to a call for help at Husky Stadium where I did CPR on an elderly man and rode in the aid car doing CPR because the crew was short handed. What an adrenaline rush!
I had lots more adrenaline rushes as I went into burning buildings, responded to aid calls, learned how to autocross -- a form of sanctioned car racing where you go through cones -- and did a lot of great things as a young adult.
In 1979 I went to college. My sister followed about a year later (I had graduated from High School in 1975 and went to college in 1979) and my sister had a great start to her college career until she started fainting.
She ended up getting a defibrillator inserted in 1981 or 1982 and the doctors started to think there was more to this Long QT thing.
We were asked to be part of a genetic study so that researchers could try and locate the gene causing our problem. Other people were being identified at Children's and Long QT was getting some attention. Teenagers had been dying unexpectedly and autopsies were not showing doctors why these otherwise normal children were dying. The common thread was unexpected fainting.
I was married in 1982 and we had a daughter in 1984. Genetic studies were ongoing and researchers had learned about a mutation that resulted in a "potassium ion channel polarization" problem and they labeled us Long QT2. Tests showed my first daughter did not have the defective gene.
We had a second daughter in 1989 and tests showed she had the gene. Research was progressing and more info was being learned about this disease. Let's go back to my brother who started all of this -- he was doing great..... and living life even though he had also developed diabetes. My younger brother, also diabetic was also doing great and was being seen regularly at Children's. Both brothers had been put on a drug for Long QT -- a form of beta blocker.
So, we fast forward to 1993, my brothers, sister, dad, and youngest daughter are doing great. My daughter is five years old and taking nadolol -- a beta blocker -- and she is doing fine. Research showed that Long QT affects young people between the ages of 13 and 20 the most and sudden death occurs unexpectedly.
My youngest brother was 18, getting ready to graduste from High school, driving into a park with his girl friend when he saw a car/motorcycle accident. He started to get out of the car to go help out at the scene and collapsed. He had fainted.
Nobody did CPR, Aid car came and took him to Children's, the aid crew defibrillated him and got him back on the way to the hospital. At the hospital my brother's heart remained stable but he had gone into a coma.
We learned that the lack of CPR and the ventricular fibrillation had caused his brain to go without oxygen for a period of time. He was placed on a ventilator and tests were done. We learned that his brain had died. My little brother was declared dead.
We were all devastated. How could this have happened? Was this Long QT thing this real and this dangerous? The only good thing to happen was that my brother was able to be an organ donor and I believe he helped about a dozen people.
Eighteen months later the Washington State Patrol found my next youngest brother dead in his truck on the side of the road. We believe he felt something starting and was able to pull over. Our family had lost two young people to Long QT. Sudden death by Long QT was real!
My sister -- the only one of us to have a defibrillator -- had several attacks and been automatically defibrillated and continued living.
I did not have a defibrillator, my dad and daughter also were unprotected. My daughter continued to take beta blockers and be checked every six months on a treadmill to see if the beta blocker was working.
in 2001 my dad got a defibrillator. In 2002 my daughter got a defibrillator and I got mine a year later. We have all had them replaced but my daughter has had four surgeries to replace defective leads, a recalled defibrillator and survived long QT with no problems until December of 2010 when she woke from a bad dream and had a cardiac arrest caused by ventricular fibrillation.
Her defibrillator saved her life. At the ER, she had texted me and said she was Ok but in the hospital, my electro physiologist checked her out, got her permission to call me and flatly said "this would be a different story if she did not have a defibrillator."
My daughter came to brunch at my place and has almost recovered from the trauma of her cardiac arrest. She has had some anxiety attacks -- who wouldn't? -- and is doing great.
This is a long story but has a summary. Research into Long QT has saved lives. The SADS organization has learned that proper care with beta blockers, defibrillators and education saves lives. While our family has lost two young people to this disease we were also a family that started a long history of research.
The SADS organization does great work and should be supported.
I've personally experienced the results of this organization in...
being benefited by the research and having a daughter live because she had a defibrillator.
Ways to make it better...
If I had to make changes to this organization, I would...
help them get more money to extend their reach to more people.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
How did you find this group?
original study member and affected by Long QT.
What, if any, change in your life has this group encouraged?
Be active and LIVE with Long QT.
When was your last experience with this nonprofit?