In approximately three weeks, my first born child, Mariah will be entering the hospital to have an ICD placed. ICD is an "Implantable cardioverter defibillator". This surgery is due to her heart condition known as LQTS (long QT syndrome). Currently we have a portable defibrillator we carry along with us.
Having her ICD implanted will eliminate the need for her AED, as well as allow her more freedom in life. She will never be allowed to participate in contact sports due to the risk of impact to the device and affecting the leads, but she will be able to continue with her high school softball career.
As a mom, I've wanted her to have the protection provided by this device implanted for years. Mariah's EP (electrophysiology cardiologist, Dr LeGras) was previously hesitant to implant the device. As a result of some recent events, he said it would be "reasonable to not place the device" but would be "completely appropriate" to have the device implanted. Since I'm her mom, I could trump her decision if she chose to not have this done....but, since she's 17yrs old and basically an adult and grown lady I made the choice to let her make the final decision. It is her body, her heart, her life and ultimately she has to live with the choices she makes. She chose to have the device implanted and shortly thereafter told me she felt much relief in her decision. I am VERY proud of her....not because she made the choice **I** would have made for her, but rather because her decision was based on very mature reasons.
A bit of information regarding an ICD:
~it will be implanted in her chest, similar to where a pacemaker would typically be placed
~she has a choice of on top of the pectoral muscle or below it. Below the muscle will result in a more intense recovery, but the device will be less visible.
~if she enters into an arrhythmia that is potentially fatal, this device will "shock" her heart muscle into an appropriate rhythm -- something very painful if she's awake during the shock.
~there is a very real chance of "inappropriate shocks", meaning it could shock her heart when it is not needed and while she's awake
~the ICD could need replaced in seven years (or sooner if she requires "shocks").
BUT....this will protect her life and protect her. We are SO incredibly blessed that we have this option!
I might add more to this post in a few days, but wanted to let our family and friends know what was transpiring.
3 comments:
Hi Tracey
Your Daughter made the right decision. I thought my story might interest you.Unfortunately my 21 year old fit active son died in 2003 of Sudden Cardiac Death. It was only through family screening that we found out that one of my three daughters was suffering from LQTS. She had never had any symptoms. Her cardiologist recommended insertation of an ICD. Like you I felt that at age 18 the final decision must be hers. She opted to have it.
Six months later she had a shock from it during sleep. Her phone had vibrated on the window sill. The startle of this was the trigger. She was not aware of the shock as she would have been unconscious when it kicked in. That was a year ago and she is now getting on with her life including playing her favourite sport Camogie secure in the knowledge that she is safe. As her cardiologist says "she has her ambulance crew on her shoulder!"
Since the death of my son I have become involved in setting up a support group with other parents. You might like to visit our website www.scdyoung.ie
Maureen
Maureen, I would love to talk with you more about this. Feel free to email me @ stroberts@gorge.net
Tracey
My prayers are with your family. Shes made a very brave decision. Good luck to you guys! Hugs
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