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Discussion:
SIDS Research
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In July, 2006, my son was diagnosed with "interrupted SIDS" after he died in my father's arms. I am sure you have never heard of that diagnosis...that is because it is so very rare.

He was 10 weeks old, a perfectly healthy baby boy. I am passionate about finding the answer to SIDS. I will never forget the agony I felt when the doctors told me that they had done all they could do for my child but they couldn't save him. He lived for a reason, maybe, just maybe it is to help find the answer.

The doctors feel that on July 4th (the day before he arrested) his heart was in SVT (supraventricular tachycardia). This is caused by an extra pathway in the heart that can cause the heart to beat out of control. On July 5th his heart couldn't take it anymore so it suddenly stopped. According to my son's EP (electrophysiologist), he only knows of 2 cases like this...the first child didn't survive, and the second is my son. As my son was being airlifted to him, he called multiple EPs in the country, but none had heard of a case like this. SVT is always diagnosed in older children and adults because they are able to tell the doctors that they feel like their heart is racing. Babies can't do that.

SVT is undetectable on a "dead" heart. The heart will appear perfectly healthy during the autopsy. My son was perfectly healthy up until the day he went into cardiac arrest. What if this is SIDS. What if the immature hearts have this extra pathway, they are too little to tell us anything is wrong.

There may be a few signs of SVT prior to the infants death. My son had them, but I didn't know they were signs of something being wrong. I am an ER nurse, I know the signs of something serious...but I had no idea that how my son was acting was a sign of a heart condition that was going to almost take his life so quick.

If anyone is willing to answer some questions I have to help in my research I would be so grateful. SIDS has to stop taking our children. Doctors haven't found the answers yet, I think they are looking in the wrong direction. My father was president of our state's Sheriff Association and just raised over $10,000 for SIDS. We are dedicated to SIDS. Please help me find the answer!
Posted on 03/02/09, 12:17 am
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Reminder: This is a support group for Sudden Infant Death Syndrome (SIDS). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Email me when others reply to this topic help
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Reply #1 - 03/02/09  9:54am
" I agree with you that there are probably some cases diagnosed as SIDS but were actually undetected heart conditions. I learned about long QT syndrome which can cause sudden death but is not very symptomatic during life and undectable upon autopsy. Maybe there are other conditions too, such as what your son has. Second, I have also read about cases where babies are found apparently "dead" and are brought back to life but their brain's are no longer functioning. In these cases they are thinking these children are dying from SIDS, are revived but can now only survive on life support. The research that I find most promising is related to seratonin levels in the brains of some babies. Dr. Hannah Kinney in Boston is doing the research if you are interested - her web site.

http://www.childrenshospital.org/cf...

I am so glad that your son is okay. My son was diagnosed as passing from SIDS in May of 2008, he was 13 weeks old, very healthy and happy. "
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Reply #2 - 03/02/09  10:57am
" Thank you for your reply. I read your profile, I am so sorry about Shane. He is such a beautiful angel.

Thank you for the website address, I will definitely be looking at that. The doctors initially thought that my son had long QT syndrome but then diagnosed him with SVT.

I am sure there are many different conditions which cause SIDS. SVT is what I am most familiar with. In an ER conference for physicians recently, it was said that the chance of SVT in the first year of life dramatically drops after 9-12 months of age. Most children are brought to the physician because they are irritable, that is when it is found. That is usually when they are in the upper end of the age range. A doctor I work with said they never mentioned anything about a case like my sons b/c it is so rare for a 10 week old to be diagnosed with it after a cardiac arrest event. My son's doctors said that if they would have not been able to save him, he would have been diagnosed as SIDS. "
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Reply #3 - 03/02/09  5:35pm
" I would definately be willing to participate. I also believe that my son Brandon died from an undiagnosed heart conduction condition. My son awakened in distress and took his last breath in my husband's arms. However, I was unable to revive him with cpr. I have been trained, I am a hospital pharmacist, but was unable to revive him. Our pediatrician mentioned a couple of heart conditions he believes could have caused this, long qt, wolffe parkinsons, and MCADD. I believe the Wolffe Parkinsons also is from an extra conduction pathway and may be the same or similar. Please read my journal. Let me know how to participate. "
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Reply #4 - 03/02/09  9:11pm
" I think that there are many factors involved in SIDS. There is no simple answer, this is why we haven't been able to identify it before now. I think the serotonin theory is very promising as well as cardiac causes and others. I am willing to consider all promising leads and help in any way. I think it is also possible that all cases are not alike, however we all share the same horrible reality of moving on without our babies! "
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Reply #5 - 03/02/09  11:52pm
" I will help you answer some questions. "
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Reply #6 - 03/03/09  9:14pm
" I will be willing to help you as well....Joshua was diagnosed, in his autopsy report, as having PDA,Patent ductus arteriosus .....SIDS was listed as 1 and PDA was #2.........this bothered me for a while that Josh had a heart condition too so I got to wondering IF he was sent here to bring light to the fact that Kayleigh maybe had the same heart problem or even a different on and after his autopsy then we would check her and find it but we went to a pedi cardioligist and he said her heart was perfect.......their pedi said that if it would help me to sleep he would send her.....he did help ease my mind but I still know my baby had a purpose and I will find it one day...... "
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Reply #7 - 03/03/09  9:57pm
" I am willing to help......tell us how "
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Reply #8 - 03/13/09  11:12pm
" For those of you who have answered my questions...THANK YOU!!! Thank you so much!! If there is someone that is willing to answer a few questions but I haven't contacted you, please let me know, I apologize. I can't thank you enough for all of your help!! "

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