Hi all. I just wanted to introduce myself.

This is a forum for parents and kids with ICDs. Discuss issues unique to parents and kids, or just hang out with some newfound friends!

Moderator: Momof2HeartKids

Post Reply
mamachaka

Hi all. I just wanted to introduce myself.

Post by mamachaka » July 6th, 2011, 8:39 am

My name is Chaka and our son Landen was diagnosed with a heart condition called long qt syndrome as a newborn. We were blessed to celebrate his 5th birthday this past weekend and blessed that he was diagnosed so early because a typical first symptom of this syndrome is death. Landen had a pacemaker placed at 4 days old and an ICD at 7 months after his heart stopped while he was sleeping. That is an amazing story and I wrote about it on my website for anyone interested:
http://www.chakaheinze.com/life-stories ... lmost.html
He has type 3 Long QT and usually has troubles in his sleep. Landen is on both propranolol and mexiletine 3 times a day and still has breakthrough heart events which result in him getting shocked an unfortunate amount of times each year. He had an unsuccessful sympathetic denervation surgery at the Mayo clinic in Rochester about 2 years ago and continues to be the most medically fragile heart patient his cardiologist treats. We are grateful for the ICD and very interested in connecting with other parents dealing with children who have one.
Thanks for taking the time to read this.
Chaka

User avatar
freckles1880
Moderator
Posts: 8664
Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

Re: Hi all. I just wanted to introduce myself.

Post by freckles1880 » July 6th, 2011, 11:01 am

howdywelcome Chaka and son Landen. We do have area for Moms and Dads and children with ICDS you can find it on the BOARD Index page (just above this post and to the left) or click this link

viewforum.php?f=2 These people have similar stories and support.

I always feel bad for anyone, especially a child to have heart problems. I now look at what you and he having gone through as they have at least a positive solution and he should be able to live a long life.

I am glad you found us and please keep reading and posting your questions and any answers for others. wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

User avatar
Suzanne
Posts: 3586
Joined: October 1st, 2009, 8:42 pm
Location: Toronto, Ontario, Canada

Re: Hi all. I just wanted to introduce myself.

Post by Suzanne » July 7th, 2011, 8:08 am

Hi Chaka and welcome :)

i read your story...it is amazing. Thank God you woke up in time, and that you and your husband had the skill to help save your son!

Bdaysmile to Landen!!
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

mamachaka

Re: Hi all. I just wanted to introduce myself.

Post by mamachaka » July 8th, 2011, 5:58 pm

Hi Freckles and Suzanne. Thanks for taking the time to read our story. I hope more parents will chime in with their experiences as well.
Thanks,
Chaka

cocoalab
Posts: 425
Joined: December 16th, 2005, 3:17 pm
Location: northern Chicago suburb

Re: Hi all. I just wanted to introduce myself.

Post by cocoalab » July 18th, 2011, 7:40 am

Mama Chaka,
I wanted to welcome you and letyou know your not alone. I read your story and was impressed by the circumstances. God was protecting your little Landon.

How are things going now? How old is Landon and at what age did he receive an ICD? Those must have been scary days.

I'm the mom of a now 21 year old son who received his first ICD at 15. He was born with a congenital heart defect that was diagnosed at 5 years. He had his first open heart surgery at 6. When he was having surgery he was having arrythmia issues and had an EP study. They could not replicate it.
He had other studies but we could never find anything to fix.
When he had his first valve replaced at 15 he had a heart attack during surgery. He recovered and went home in a timely manner. Six weeks later shortly after his follow up Andrew had a cardiac arrest at school. His principle used an AED on him and he converted the first shock. Shortly after he received his ICD.
That is when we became a part of this ICD community. Well I did and the support is really wonderful. Many here have been with us through so many ordeals. He has had his ICD replaced once and had an LVAD implanted just last December. We are hoping for a new heart in the not too distant future.
This forum is not very busy so you may want to spend time on the main one. I hope to see you back often and to get to know you and your son.
I also have another son Joel who was diagnosed with long QT syndrom as well. He is doing fine.
Wendy: Andrew's mom(23, L-TGA (ventricular inversion), tricuspid valve replaced 3x-7/96 and 7/05, 6/07 and mitral valve 6/07, MI at last surgery, cardiac arrest August 05, ICD 8/27/05, Bacterial Endocarditis requiring replacement of two valves and his ICD May through July 07) L-VAD 12/7/2010, on the transplant list since April 2011! Rom 4:5 But to him that worketh not, but believeth on Him that justifies the ungodly, his faith is counted for righteosness

Post Reply