Yesterday we found out from Jack’s cardiologist that his genetic testing came back positive for Long QT Type 3. Long QT is what the medical staff at Akron Children’s Hospital suspected to have caused Jack’s death. It’s a rare heart arrhythmia, and Jack’s specific form of Long QT is even rarer. I’m having a hard time understanding how only 18% of people who suffer from this syndrome go into cardiac arrest, and only 4% of them pass away from this, yet somehow this happened to my little boy.
I’m angry that the chances that this syndrome were a mutation are slim, and more likely was passed on to Jack by myself or Lauren. I can’t bear the thought of thinking that Sam or Lauren also may have this same condition, and that now the three of us also have to submit to genetic testing to find out if we carry this gene. So I’m pissed off today, and I’ve got nothing funny to write. Long QT, you can go f’ yourself. My life’s mission will now be to help make sure you don’t take any other child’s life prematurely. I hate you.
Tagged with: long qt syndrome • romano ward syndrome
May 27th, 2009 at 4:54 pm
I’ve subscribed to “long QT” alerts on the internet for 13 years. Today, it brought me here. My son was diagnosed at age 7 after a cardiac arrest, but he survived. His genetic testing has returned no positive results thus far. I am sorry to learn of your loss. My sympathies to you and your family. There are some great support groups out there if and/or when you’re ready. sads.org or longqt.org. Again, I am truly sorry. But, if you have other children, you owe it to them to explore some options. I wish you peace with what you must now deal with. Best of luck for the future.
May 28th, 2009 at 6:10 am
Steve,
I’m another LQT parent who just found your blog post. My daughter is also a survivor, she was diagnosed last year just days shy of her 13th birthday. I also have a 3 younger kids and this has been a tough year between us and the universe trying to figure all this out. I’m sure you and Lauren are both going through so much worse right now, trying to deal with both the now and the future. As Patti said, there are lots of us out here and good organizations when you are ready to connect. I also found your wife’s blog post and commented there and I’ll say the same to you: just please know that today there is one more soul out there thinking of you.
May 28th, 2009 at 12:39 pm
Like Patti I found your blog through a google alert for “Lonq QT”.
I want to tell you how very sorry I am that you have lost your son. My deepest sympathies are with you and your family.
May 28th, 2009 at 2:02 pm
Steve,
I found your post very touching and I am so sorry this rare condition somehow found, and took, your little boy. I work at the Sudden Arrhythmia Deaths Syndromes (SADS) Foundation and know first hand how hard families, advocates, and experts in this field are working to avoid such a loss, so it is heartbreaking when we hear of one.
In our network there are other families who have experienced the loss of a child. If you or your wife would ever find it helpful to speak to them, please let me know.
Please know that our thoughts go out to you and your wife at this time.
Joanne Robinson, Family Support Services
May 28th, 2009 at 3:04 pm
Thank you all for the comments and links. It’s been only 55 days since Jack was suddenly taken from us, and we’re still very much hurting and lost. Lauren and I have not yet begun to do much research on Long QT, but we are planning to start a foundation soon in Jack’s name that will hopefully be used to help fund research for these genetic defects, and also to help other families who have children with Long QT.
Right now, we are in the process of working with the insurance company to get genetic testing approved for myself, Lauren, and my other son Sam (who is 3 years old). I’m cautiously optimistic that this will be successful. We know the name of what Jack had, but other than that, we know very little about what we are up against. I will continue to keep you informed of what we encounter/find.
Thank you again for your comments.
Steve
May 28th, 2009 at 3:18 pm
Steve, I am very sorry for your loss. My son has LQT1 and my daughter has LQT1&3. SADS is a good resourse for support. Good luck to you and your Family.
May 28th, 2009 at 5:12 pm
I found your post in the same way that the others who commented found you. I am so very sorry to hear of your loss. Two of my three children have Long QT Syndrome. We did not know it ran in the family until I was pregnant with our third child, who was subsequently diagnosed with it at three days old. My thoughts are with your family in your grief, and in the uncertainty you feel now as the rest of your family is tested. Take care, Renee
May 29th, 2009 at 4:36 pm
Steve,
I, too, am a dad whose 15 year old son died of previously undiagnosed Long Q-T. Both his brother and sister were subsequently diagnosed with LQTS and are treated with medication and ICD’s. There are no adequate words to express the depth of the pain when you lose a child. The SADS Foundation, http://www.sads.org provided the most complete and most helpful information as my family struggled to deal with our family’s death and diagnosis. Over the next several months, I trust that you will discover many resources for your family as you try to accommodate LQT. In some communities there are support groups for parents who have lost a child from Sudden Cardiac Death. “Compassionate Friends” is a national network of support for families whose chilld has died. If I can personally help you or your family with a conversation about Long Q – T, Joanne at the SADS Foundation can provide you with my contact info. Please accept my sincere sympathy on Jack’s tragic and untimely death.
June 4th, 2009 at 12:13 am
A quick update. Sam and Lauren went for their genetic testing today, and I will go next week. The geneticist informed Lauren that Jack’s specific form of Long QT Type 3 is a mutation that the genetics testing lab has never discovered before, making this situation even harder than it already is to accept. Today it’s been two months since Jack passed away, and the news just doesn’t get any easier.
March 26th, 2010 at 11:06 pm
Steve, our family will be praying for yours. I have so feared the worse, and have learned to hand it over to God, because I would have gone crazy worrying. Our Son has Long QT 1 and 2, He was Diagnosed at the age of 18 he is now 20 yrs. He has had a VERY difficult time with accepting his condition, and I have felt and sometimes still feel he lives on the edge. He was dead for 20 minutes, and in a coma for 3 days. The first year after and ICD was placed, we abslolutly went crazy. He in my opinion went on a suicidal fit, he had totally lost control of himself. After, many downs in his life than ups, he has slowly come to realize that he was going to live, however, I stil dont think he takes his meds. He was also diagnosed with ADHD at the age of three, and Narcolepsy at the age of 19. We just recently found out he might be a father of a child, so we are now in the process of DNA testing, and court hearings. I do hope you can cope with this in your family, as we have had too. Since we found out almost three years ago, I have aged, and gone gray. Jesse is our last child out of seven. I am tired, and I can’t get any help in getting me tested, and my other boys are acting like they don’t have it! I am just tired of fighting. Sometimes I know I will be getting a call on day, and the call will not be what I want to hear. God bless you, ans as you I HATE THIS SYNDROME, I hate it will my all!
Kat
June 8th, 2010 at 6:56 pm
I can’t believe it took me so long to stumble across your site, Steve, but boy, am I glad I did. My heart goes out to all of you who are living with this, either as a patient or a family member, and especially to those who have lost a loved one to this insidious syndrome. I am a long QT patient who was first diagnosed sixteen years ago. I used to live in fear for my own safety because of LQTS, and now worry every day about my children. My seven year-old identical twin sons were recently diagnosed, and I have been through six months, several Drs’ testimony on my behalf, and five levels of appeals, and am still unable to get insurance approval for genetic testing on me, because I am the known carrier, so I can get a definitive answer on my third son, my siblings, and their children. I also went through a gut-wrenching ordeal, literally begging and reduced to tears at public meetings, to try to get our local school department, with a $55m budget, to make a $1,000 expenditure to place an external defibrillator in their school. Humiliating, and excruciatingly dehumanizing to have to beg them to acknowledge that your child’s life is worth $1,000. I am in tears now as I write this, for what I KNOW all of you are going through. It is impossible, at least for me, to look at my children and find any level of acceptance of it at all. I am trying to navigate a fine line between letting them understand that they have this condition, the symptoms, and when they need to get help right away, without instilling in them the fear and anxiety that I know first hand that comes along with it as a patient. I mean, they were both convinced they were going to play for the Red Sox one day, and I had to tell them they can’t even play little league, because their doctor said no organized sports. Without exception, literally the worst thing I’ve ever had to do. I’m with you, Notorious Dad: this BITES. I wish I had the answers, but I am deeply grateful and thank all you for letting me know I’m not alone.
September 16th, 2011 at 12:31 pm
Hi everyone im 27 years old and my genetic test came positive for all 3 types of LQT . I am planning on having the aicd Implant within a month. For those of u with kids my age , feel free to have them ask me any questions regarding this . At least now this awareness can save lives and prevent future mishaps . Sucks having a pacemaker at 27.
November 26th, 2011 at 11:06 am
We are heading to the Mayo Clinic in Minnesota next month to search for answers and get opinions to make serious decisions for myself and 3 sons all diagnosed with Long QT 3. we have genetically been tested positive. i never sleep. i lost all quality of life with this news. I need answers. I’m so sorry for your loss, I cannot even imagine the frustration you live with every single day. I will keep you in our prayers and thoughts. I hope I can learn more and get answers that will help create awareness and support. Take good care!!
December 6th, 2011 at 9:55 pm
The waiting is excruciating… my son too diagnosed with Long QT and after fighting through the insurance appeals process are awaiting results from the genetic testing to discover what type of long QT my 12 year old son has. We should know by Christmas…. He too thought he was going to follow in his dad footsteps and play professional baseball… we have been through a divorce, an unexpected move, ADHD diagnosis and now this diagnosis all within the last year…. very overwhelming for a little guy. His strength to deal with the unknown has been inspiring. He takes his beta blocker every morning and checks in with the PE teacher to see if he can join in for anything for PE that week. It is gut wrenching to know after results are back the testing starts for the rest of the family including his 8 year old sister. I pray every day we will all find the strength to cope. Be still my soul…….and all of your souls…
January 7th, 2012 at 11:29 pm
I am so very sorry for your loss. This is a troubling and hard syndrome to figure out. There are actually 17 types of Long QT. My daughter was diagnosed with Long QT 3 about three years ago. She had complained about waking up in the middle of the night with a racing heart for about six months before my husband and I took her to the cardiologist. (You just don’t think at sixteen years of age that there is anything seriously wrong with your child) We were very fortunate my daughters LQT 3 was caught with the help of an event monitor which prompted the electrophysiologist to promptly (that day) implant an ICD. She now takes a small dose of a beta blocker and sees her electrophysiologist a few times a year. He is an awesome Doctor. I would highly recommend him…..in fact we found him by way of several recommendations as being one of the top doctors in his field here in Chicago. My husband and I are very thankful we found him and he saved our daughter. We also did genetic testing and my husband carries the gene but shows no symptoms which I guess can happen frequently. My advice to anyone who knows their child carries this mutated gene would be the stop at nothing to have an ICD implanted. This is the only way to treat LQT. My deepest heartfelt condolences go out to any parent who has lost a child to this syndrome.
January 7th, 2012 at 11:34 pm
This is a follow up to those of you who are arguing with your insurance carrier over genetic testing. It is very expensive. Our electrophysiologist used a genetic testing company called Gen DX. This company will not charge you more than $100.00 per person to test for the gene. We held off for two years with genetic testing because it was so expensive, than our electrophysiologist told us about Gen DX.