It was late fall of 2008, things were crazy, Brian had just had two strokes, I was working full time taking care of the kids and doing my best to be a support of wife. Out of nowhere I get a call ChloeJace's biological father had been exercising and his heart stopped. There was a quick response with CPR and an AED. He was shocked 4 times before they got a pulse. He was transported to the hospital and placed in surgery. At the age of 29 he had to have a pacemaker and defibrillator. I thought those were only for old people. I know that 70% or people that are resuscitated don't leave the hospital.
From this the doctors were able to tell that ChloeJace's dad had a genetic condition that was called Long QT Syndrome.
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Prolonged Q-T interval
Definition from the Mayo Clinic:
Long QT syndrome (LQTS) is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. These rapid heartbeats may trigger a sudden fainting spell or seizure. In some cases, your heart may beat erratically for so long that it can cause sudden death.
You can be born with a genetic mutation that puts you at risk of long QT syndrome. In addition, certain medications and medical conditions may cause long QT syndrome.
Long QT syndrome is treatable. You may need to limit your physical activity, avoid medications known to cause prolonged Q-T intervals or take medications to prevent a chaotic heart rhythm. Some people with long QT syndrome need surgery or an implantable device.
ChloeJace was on several of the medications that can cause LQTS and she had a condition that could also cause it (from the brain tumor and surgery). Knowing that she could have it we went to our doctor that did some tests(no sign of LQTS) and sent us to a pediatric cardiologist. There they did more tests (she may be borderline). Oh, and when they say it is borderline, they should just say we don't know! So we were then sent to a pediatric electrophysiologist. To get a diagnosis we had to undergo genetic testing. You can't imagine how much it costs to take one vial of blood. Six to eight weeks later we got the results, yes she did have LQTS. That means no exercise, or competitive sports, no swimming, biking, running. No sudden startle or shock to the system. Let's not talk about how she should not have had surgery or been put under without clearance for a EP. That just shows that God has other plans for her. To think anytime she was out playing she could have collapsed and died. I won't go there with all the what if's and could haves'. We have been in the process of getting our own AED, for 6 months now. ChloeJace takes medication every night that she will be on for the rest of her life. The medicine does not mean that she won't ever have an incident. They wait until you have to use an AED to bring your loved one back before they will do surgery (insurance reasons).
Please don't over look the fact that it won't happen or that their is no history of it. We were told ChloeJace was borderline, and only the bank breaking test to confirm. Don't wait for someone to die, to do anything. YOU can become CPR certified and learn how to use an AED. YOU can demand life saving AED's to be placed at camp, schools, churches and other gathering places. The average EMS time vary. Within 4-6 mins. brain damage can occur, and the likely hood of getting a pulse diminishes greatly! What you don't know can hurt you. I know God's plan for ChloeJace is much greater. I also believe that God has given us an opportunity to help save lives.
Note: If ChloeJace's dad had died we would not know that she would need to be tested. After the electrical beat stops you cannot test, except genetic testing. It would have been another case of man dies of sudden cardiac arrest. I don't think that considering the cost of the genetic test that they would do that on a dead person. Next time you hear football player collapes and dies on field, you will know that the school did not have an AED close with people trained on how to use it. And you can assume that the child has some kind of condition that the family didn't know was in there genetics.
You can be born with a genetic mutation that puts you at risk of long QT syndrome. In addition, certain medications and medical conditions may cause long QT syndrome.
Long QT syndrome is treatable. You may need to limit your physical activity, avoid medications known to cause prolonged Q-T intervals or take medications to prevent a chaotic heart rhythm. Some people with long QT syndrome need surgery or an implantable device.
ChloeJace was on several of the medications that can cause LQTS and she had a condition that could also cause it (from the brain tumor and surgery). Knowing that she could have it we went to our doctor that did some tests(no sign of LQTS) and sent us to a pediatric cardiologist. There they did more tests (she may be borderline). Oh, and when they say it is borderline, they should just say we don't know! So we were then sent to a pediatric electrophysiologist. To get a diagnosis we had to undergo genetic testing. You can't imagine how much it costs to take one vial of blood. Six to eight weeks later we got the results, yes she did have LQTS. That means no exercise, or competitive sports, no swimming, biking, running. No sudden startle or shock to the system. Let's not talk about how she should not have had surgery or been put under without clearance for a EP. That just shows that God has other plans for her. To think anytime she was out playing she could have collapsed and died. I won't go there with all the what if's and could haves'. We have been in the process of getting our own AED, for 6 months now. ChloeJace takes medication every night that she will be on for the rest of her life. The medicine does not mean that she won't ever have an incident. They wait until you have to use an AED to bring your loved one back before they will do surgery (insurance reasons).
Please don't over look the fact that it won't happen or that their is no history of it. We were told ChloeJace was borderline, and only the bank breaking test to confirm. Don't wait for someone to die, to do anything. YOU can become CPR certified and learn how to use an AED. YOU can demand life saving AED's to be placed at camp, schools, churches and other gathering places. The average EMS time vary. Within 4-6 mins. brain damage can occur, and the likely hood of getting a pulse diminishes greatly! What you don't know can hurt you. I know God's plan for ChloeJace is much greater. I also believe that God has given us an opportunity to help save lives.
Note: If ChloeJace's dad had died we would not know that she would need to be tested. After the electrical beat stops you cannot test, except genetic testing. It would have been another case of man dies of sudden cardiac arrest. I don't think that considering the cost of the genetic test that they would do that on a dead person. Next time you hear football player collapes and dies on field, you will know that the school did not have an AED close with people trained on how to use it. And you can assume that the child has some kind of condition that the family didn't know was in there genetics.
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