5 year old HLHS son needs pacemaker

Hi!

I'm writing because my 5 year old son was born with HLHS (Hypoplastic Left Heart Syndrome). He has Sinus Node Dysfunction and will need pacing in the future. We are anxiously awaiting that time, but right now he is having Holter Monitor tests every 4 weeks. He is symptom free in every way (activity level, energy, etc...) but has a very slow heartrate which even dips into the 40's when he's in a deep sleep. I'm SO EXTREMELY nervous because of the fact that Tate will have to have his chest opened up for placement of the pacemaker due to his HLHS anatomy. Since he has already had 3 open heart surgeries, this will be a very tedious task trying to get through all of the scar tissue. I was wondering if anyone else in this group has had to have their child's chest opened for pacemaker placement. Compared to open heart surgery could you please tell us what the surgery and recovery experience was like? We will be going to Texas Children's Hospital in Houston under the hands of Dr. Charles Fraser when it's time for Tate's pacemaker. Will his life be mostly normal after receiving a pacemaker? We are still so saddened that he will have a pacemaker. He's been through so much already and this just wasn't something we were expecting. Thanks for your help!

Fully Relying on God,
Cheri Lewis and family
TEXAS

5 Comments

Hope

by The Bunny - 2007-11-04 09:11:15

Your family has been through a lot! Keep the faith--you'll make it through this too!

My opinion is that the pacemaker is so very minor compared to the open heart surgeries your son has had. Not sure if they do anything different in his case, especially with his HLHS. You mention they will have to open his chest...do you mean like the open heart surgery? Gosh, I hope not. For an adult an incision usually is made a few inches below the collar bone. Lead wires (1 or 2 depending on the need) are placed through the subclavicle vein into the heart, they are attached to the the PM unit. The PM will pace your son's heart to a more regular beat, giving him a more normal life I would suspect. I hope that is the type of surgery your son will face. I've had my PM since 1999 and it was night and day how I felt. My heart rate went down to 28 bpm and at times in 3rd degree heart block during my ICU stay. After surgery, I instantly felt 100% better!

My daughter at 7.5 months old had open heart surgery to repair a VSD (12 mm hole in her tiny little heart). She's doing fantastic, now, at age 6.5 years old. In Sept. 07 I had her checked as she was complaining of chest pains. The dr. did a heart monitor, EKG and Echocardiogram--all checked out good. She has a lot of premature beats (PVC's) but dr. isn't worried at this point in time. I've always wondered if she would need a PM due to the many PVC's but so far so good. Her recovery of her open heart and also of those kids that had surgery during the week all recovered so amazingly quickly, that I hope that gives you encouragement that all will go well.

Please keep us posted and we'll keep him and your family in our prayers! Remember, keep the faith!

Epicardial lead placement?

by Angie_O_Plasty - 2007-11-05 11:11:49

I'm assuming that when you say he has to have his chest opened up it has to do with placing the leads on the outside of the heart rather than through a vein (because they don't want to risk occluding the vein in someone with HLHS anatomy)--is that what you mean? Still, it shouldn't be as big of an operation as the Norwood/Fontan/etc. that he's already been through. It's understandable that you're nervous, but try to think of this as your son having "backup power" for when his heart decides to slack off :-)

Keep the faith...

by dward - 2007-11-05 12:11:34

I agree with Bunny, a pacemaker should be very minor compared to open heart surgery. (I had a sprained ankle as a child that caused me more problems than getting a pacemaker!)
I know they sometimes put the PM in the abdomen area in children because of their activity level.
Of course, you can ask your Doctor what would be involved once it becomes necessary.
I know it may be hard but - try not to focus on what may appear to be negative. Being nervous, sad, etc. is not healthy for ANY of you.
Try to focus on the blessing that we now have all this technology available to people who need it. How great is that!?!?
Keep positive. Smile alot. Ask questions. Appreciate every moment, and keep the faith!!!

Peace

by clichtenberg - 2007-11-09 10:11:38

Cheri,

All the pp's are right. The pacemaker is really nothing compared to what your son has already been thru. My ds EP says it's along the same lines as having eye glasses. Yes it's annoying, but when you need them, you need them. OK. Yes, they have to go thru the breast bone. It kills me that they have to keep rebreaking it.....but I've been told sometimes they can go thru the ribs from the side? I'm not really sure, maybe you can ask. They place the generator in a pocket in the abdomen. My son's was above the stomach, but he needed a g-tube so now it is on the other side above the liver. Also, they have to replace the leads as they grow. My son is 14mo, his was put in after his rhythm didn't come back after ohs. We were out of the PICU within 3 days. It went really quickly. They said the wires/pacemaker will probably need to be replaced when he is about 3-4 years old.
Good Luck!

Encouragement or just conversation

by repwork - 2010-01-27 12:01:43

I would write about a pacemaker being a very easy and quick procedure, I know all (10) of mine have been easy, quick, and very little to NO pain. When I was a child they would keep me in the hospital for Observation for 3 days and now I have it done before 9 am and usually get to go home on the SAME DAY. I was 3 years old when I had my first PM. If you would like to join my Facebook page feel free, www.facebook.com and enter my email address repwork@gmail.com

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Member Quotes

I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.