Child with pacemaker

Hi All,

I am new to this group. My 11-year old son was diagnosed with CCTGA 4 months ago, and subsequently had a pacemaker inserted for complete heart block. He is finding it exceedingly difficult to accept his condition and his pacemaker. I know that he is young and it will take time to get used to it, but I was wondering if there is anyone on this forum that can offer advice to me as a parent to help him cope and accept. If there is anyone with a child his age with a pacemaker, I would love to hear from you especially. Any chance there is someone that has a pacemaker because of CCTGA? It is very rare, but I am still hopeful finding someone to talk to about this! 

Thank you.


5 Comments

Mother of a 7-year daughter

by Slowdive - 2021-10-26 08:54:18

Hi! My 7-year old daughter got her pm last year, also for complete heart block. Cause still unknown but likely an infection (because the heart performance recovered during the lasts months). She was 6 when she got it and it came all of a sudden. Started with occasional dizziness a few months in advance and in the end several faintings per day (and night). After 3 days in hospital it was clear there would be no other option than a PM. My husband and I were shocked and I was quite traumatized. We did not have enough time to explain to her in detail what would be going to happen. She and I were flown by helicopter helter-skelter to another city to get it implanted there. The day of the operation was even pre-poned. So we explained everything more or less only afterwards, for a 6yo difficult to understand anyway. First we told her that this would be a “magic box” to help her heart beating and as time went by we explained more and more and she accepted it from the very beginning. The first 2 weeks we tried to keep her a bit away from too many sport activities, but that’s not really possible for a child, so it was also ok to let her do as much as she wanted. The wound recovered quickly. She does not let anyone touch the area of the pm and is very careful when it comes to physical contacts with friends when they play. But in general she is quite relaxed and it does not really think about it. So in that regard we have been very lucky. I read here a lot from other members that it’s easier to accept it when you realize how it improves and saves your life.

On the other side, for me as the mother it took quite a while to trust the pm. The child did not worry much, but I was traumatized from the many times I saw her passing away. Every time I was scared she would die. It was hard to keep my composure in front of her. Only time helped me to become more relaxed. It took like 2 months until I did not worry anymore. The medical checkups also helped me to accept that all is working fine.

Try to find out what exactly makes it for your son so difficult to accept it. Does he already understand the medical reason behind? Maybe he is also a bit scared? Or worried about restrictions when it comes to sports? I was assured by doctors and many nice people in this forum that you can do almost everything with a pm. In the beginning I was also afraid about electromagnetic interferences. My conclusion: no need to worry too much about that!

I wish your son and you all the best!

Child

by AgentX86 - 2021-10-26 11:42:23

I have no experience with a child with a pacemaker but 11 is almost the worst age for such things. Everything is happening to their bodies already and this is just one more.

I can only suggest that you make it clear that he can do just about anything he wants to do. It'll make his life better. It will make him "normal". Same goes for you!

I'm shocked that it too so long to diagnose CCTGA. My 6yo granddaughter has/had CCTGA and it was found at birth. She was immediately flown to Childrens Hospital in Boston and had corrective surgery when she was two days old. The surgeon was pissed that they didn't find it in utero so she could have been born where they would be prepared for this complication and not have been exposed to the outside.

Responding to Slowdive and AgentX86

by Mom_Of_A_Wired_One - 2021-10-30 20:35:26

Thank you for your responses. @Slowdive: I guess it is the opposite for us - I have been so thankful for the PM, but my son tells me almost every day how much he hates it. Fortunately he is quite open talking to me about his reasons, which are that it makes him feel less human having something "unnatural" in his body. Even though he understands that it is necessary and the benefits of the PM, he sees it as something that sets him apart and makes him different from others. It doesn't help when I tell him that nobody even knows it is there. I have always encouraged being different in my children, but he is at that age where it matters that he is. His grandmother had a cochlear implant, and his grandfather has a stent, and his sister has had screws in her knee, so he know other people close to him with "unnatural" elements in their bodies, but he is still struggling with it. I will say that he is quite sensitive in general. 

@AgentX86: I think you are right that the age is an important factor in his struggling with acceptance. Unfortunately, because of the CCTGA, he cannot do anything that he wants to. He will have to avoid activities that can strain his heart and cause valve function and regurgitation to worsen. The only reason his CCTGA was picked up was because his pediatrician picked up a heart murmer during his routine Well Child check-up this year. Sent him for an echo, and the next day our lives changed. I tell him his heart is an absolute miracle. Retrospectively, he had told me quite a few times that he was feeling dizzy, and I always told him to go and drink some water, and when he felt tired that he was unfit from sitting around during Covid! I have often wondered what changed that made that heart murmur "appear", as it had never been picked up before. He had started running track the summer before Covid, and I have always wondered if that additional strain to the heart had changed something. One of the many things to wonder about! I am glad to hear that your granddaughter's got caught early. We have been talking with various CCTGA centers in the country, and it is becoming clear that he is past the age for corrective surgery. Is your granddaugher doing well and  without complications? 

I was 14 when i got mine.

by Chrislovell1 - 2021-10-31 19:39:07

Tell the little dude everything will be ok, from someone who had an implant due to sinus mode, bradycardia & sss i can only imagine how horrible it was for you & my own mother watching me/him go through that at such a young agr!  when i was in school i hated not being able to play rugby or do certain things, everyone feeling like they had to look over me with everything i did. I resented having the pacemaker for a long long time, it was hard to sleep, hard to get used to the pain when either bumping into someone or something! But as times gone on ive realised how lucky i am. Id of been long gone by now if it wasnt for the sorcery inside me, as he grows he will do the same! It isn't easy for any child being "different" honestly he will learn to forget about it, only recently after over 10 years have i been getting problems and i promise as a person who was once in his shoes, he will learn to appreciate it as he learns how lucky he may be to still be here. Im 26 semi with a semi successful music career as a DJ and a music producer, ive toured the world and the UK with the pacemaker, tell him hes like iron man😁 Best of luck for the young one! 

nineteen

by dwelch - 2021-11-01 22:33:40

maybe not as helpful my first one was at 19.  I am 34 years with pacers now, on number five.   He will do bettet on pacer count than a number of us old timers here (Agent86, Tracey_E, and some others).

We had some teens here a couple of years ago now I think I hope that they or others see this question.  Or perhaps you can post another one with a different topic line that they might catch.   One said they were teased in school and that is just not right.  So perhaps there is some apprehention there.    

I was very active before the device and quite frankly should have died.  I have CCHB and not what your child has.   But was around 12 or so when they started watching me and telling me I couldnt do sports, I just stopped telling the doc what I was up to when he told me I could die doing this or that.  

I grew up in the era of the six million dollar man and bionic woman tv show, so maybe that helped.  Granted today every other show, half the comic movies, is some person with some extra gear built into them.

Some folks have glasses, some folks have pacemakers, it is what it is. Nobody is normal and perfect or at least if they are right now, the wont be forever, something always comes along.

From a heart block perspective, a pacemaker makes that nice and normal, lets you go do normal things.  It only bothers you a few weeks every 10 years give or take.   Other folks here with CCHB and a handful of pacers are driving a few days after the replacement (which in theory your child will be driving by the next one), but sleeping in the position you like and washing your hair with both hands, these things take a little longer.  Then you forget the thing is there again.

And that is what WILL happen.  It is like a belly button or a middle toe, you know you have one, but you forget about it until you bump it into something, then shortly after you forget again.

The device does not define him, it simply allows him to be normal, just like glasses.

You know you're wired when...

Your electric tooth brush interferes with your device.

Member Quotes

I'm 43 and have had my pacemaker four weeks today. I'm looking forward to living another 50 years and this marvelous device inside me will help me do that.