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Story told by Barbara Madison, Johnson City TN 2011:
My middle child Kim Le Phan passed away in 1996 from a sudden cardiac death at l6. She was a healthy active teenager and loved friends and her family. She was considered by all doctors to be healthy and she had no known heart problems or any illness when she died so suddenly and her autopsy report said: No known cause of death. She never had any signs or symptoms of anything being wrong with her heart. She did at one time have an EKG done and I was told she needed follow-up care. So I took her to see her doctor and they did an EKG on her and said her EKG was fine, but if I was concerned they would refer her to see a specialist. I said Yes, and took her to the specialist and they did a lot of tests on her heart and a ultra-sound of her heart and everything checked out so well and I was told, she could go on doing everything she does and that they didn't recommend her coming back - unless something was wrong. So she was healthy, they said, but then about 8 months later, she died unexpectedly. I have always searched for answers as to why my healthy child died and through the years I finally got my answer. It had been 15 years later that I discovered, that my daughter most likely had Short QT Syndrome and no one knew about i back then since it wasn't discovered until 1999. Last year we found out, that my youngest daughter has Short QT and she now has an ICD-implant. Also, I found out, that I too have short QT and I too have the ICD Implant. My youngest daughter and I both got our ICD implants in 2010. I just found out this year (2011) that my oldest daughter has Short QT Syndrome also. I have to say, that none of my children had any signs of heart-problems. We would never have known of short QT, if Dr. Brugada had not told me, that he thought my youngest daughter had it. And then I found out about the Doctor who discovered it - through my own research. Through the years I had myself and my daughters in research-study's looking for answers, because I felt in my heart that whatever happened to Kim could be something that my other kids could have. We were in a research-study for a long time and we were all "negative" and then I looked into Brugada-syndrome since my kids were part Asian, but they were negative for that also and that's when I found out about short QT. and I found this web-site and I contacted the Doctor here that discovered it. I must say that I was blessed to have found out about Dr. Bjerregaard and that, without his help, we may have never got our implants and been treated for short QT. The heart doctors here where I live know nothing about short QT Syndrome and don't know how to treat or diagnose it. We had to go through all of this with the help of Dr. Bjerregaard. Our Doctors had to talk with him before doing anything and he has been so helpful to us in getting a diagnosis and treatment. I feel blessed to have found him and this web site and so thankful, because now we can all be tested and he also helped us to get into a research-study for genetic testing on short QT. We are still waiting for the test results from the research-study, which should be very soon - I was told. So, now I am just praying, that they find something in the genetic test, so we have something to go on - so I can find out, if any of my grandkids have inherited short QT Syndrome. I have 4 sisters and 2 brothers and a half-brother and so far none of my sisters have short QT. One brother may have it and my half-brother has it. I have one more sister who hasn't been checked for it yet, so I am hoping to get her EKG soon to see, if she has it. And - also - I am trying to get my oldest brothers EKG, to see if he has it. I just don't understand how or why I passed short QT Syndrome to all my children. Maybe someday they will find out how or why it is passed on to some children an some not, as they do more research on it and hopefully help prevent it.
Thanks for reading my story and God Bless.
In loving memory of my daughter Kim Thi Le Phan 10/31/1980 to 11/16/1996.
We lost her, but she helped save us, because if not for her, we would never have known about Short QT.