4 year old with AV block-may need pacemaker

Hello All:

After a routine checkup at a new pediatrician, it was discovered that my four year old has a heart murmur. She's also small for her size and so she was referred to a pediatric cardiologist. The PC discovered an AV block. I do not know the degree yet-he did ultrasounds, ekg, and she wore a heart monitor for 24 hours.

We meet with him again in about week-we met with a genetecist to see if there were any underlying conditions that might conflict with the pacemaker-and this next appt is to discuss the plan moving forward.

I'm very anxious, worried, concerned. I'm afraid she will die suddenly (the doctor assured us this wouldn't happen at her age, but STILL), or not live a full life, etc.

I am just looking to talk with others who have children with pacemakers....thanks in advance, and hugs to you all.

4 Comments

congenital av block

by Tracey_E - 2014-12-02 04:12:41

I totally understand your worry, but there's no reason to think your daughter isn't going to live a full, active life!

I was born with 3rd degree av block and have been paced for 20 years now. I'm 48. When I was a kid, they didn't give pacers to kids so I got by without until I was an adult. No one would look at me and see a heart patient. I'm healthy and active, there's nothing I want to do that I cannot. I am mom to two teenagers, a Girl Scout leader, own a business, hike or ski most vacations, do Crossfit every morning, kayak and zipline every chance I get.

It's good to meet with the geneticist, but they may not have answers for you. As far as I know, the only genetic link for av block is Lupus antibodies from the mother. My mom does not have Lupus and mine is just a fluke. Most of us never know what caused it. It's not genetic, so there was no chance of passing it on to my children. My cardiologist did a work up on them anyway, more because he was curious than because I was worried about it. Both are perfectly normal.

Here are some really good animations that explain av block and how the pacer fixes it.
http://health.sjm.com/arrhythmia-answers/videos-and-animations
If we have to have a heart problem, this is the simplest with the easiest fix. Often the heart is structurally normal and healthy, just missing that little electrical connection that the pm easily fixes. It sounds a lot worse than it is.

I'm no dr, but if her rate was high enough that they had to do testing to find the block, she is not in any danger and she's probably not in block all the time (3rd degree). Do you know what her pulse is on average? If her pulse was dangerously low, or if her oxygen saturation wasn't normal, they would not have sent you home. Can she run and play with the other kids and not complain she's tired or dizzy? That's another sign she's fine! If she's in block all the time, as I was, the heart rate never goes up on activity. When we are born with it, the body doesn't know anything else and is easily able to compensate when we are kids. My rate was 44 until the day I was paced, always, no matter what I did. Unless I overdid it, I felt fine. As I got out of my teens and into my 20's it got harder and harder to compensate so it was time to be paced.

We have some parents of kids with pacers, we also have some adults who have been paced since birth, and then we have a number like me who were born before kids were paced so we got by without for years. One thing we all have in common? We are thriving! It's perfectly normal to be afraid, to even go through a period of mourning, but she's going to be ok.

One last thought, it's harder on the parents than the kids. I never thought twice about it, never worried, never was scared. I knew my heart was different but it didn't cross my mind it was bad or scary. My parents were amazing. As an adult and parent myself, I can appreciate the fear they must have felt, but they never let on to me. I had a perfectly normal childhood. We focused on what I could do, not what I could not. But now kids can be paced, so there's very little they can't do.

Actually it's the opposite

by Theknotguy - 2014-12-02 04:12:43

Actually it's the opposite. Instead of your little girl having a shortened life, she can expect to have a longer and better life. Within weeks of the implant of the PM your little girl can be expected to get back to doing little girl things and having a good time.

If you have time to look around the forum you'll see people with PM's who are living full and active lives. Quite often they're living a better life than what they would have without the PM. Children seem to do as well, if not better, because they don't have previous expectations. As far as they know, all the kids get PM's as they grow up. Once they start to feel better, they get busy doing kid things, then Mom starts getting gray hair.

The placement of the PM, i.e. where it is put in the body, can be different for children versus adults. Most adults get theirs in the "pocket" between the shoulder and the rib cage - either right or left side with the left side usually being favored. I'll let the others who have gone through the process give you the details.

Questions or worries going through your head about your child leading a "normal" life should be put to rest. Once your daughter gets through the time period for the wound to heal and the leads to be incorporated by the body she should be able to go out and play just like any other child her age. You also don't have to worry about any electrical items around the house - none should bother the PM. Plus electrical items she will encounter in normal day-to-day life won't bother the PM. The only areas which may cause a problem with the PM are industrial areas and power plants. Most kids aren't going to be in those areas because of safety reasons anyway.

We had one parent on this forum who forbade her child from playing with magnets in kindergarden / daycare. Should not have worried and should have let her son participate with the other kids. Small magnets aren't a problem. I've actually placed magnets on my PM and nothing happened. Zilch, zero, nada, nothing. Magnets used in kindergarden / daycare won't bother the PM. She's more in danger of swallowing the magnet than having it bother the PM.

I'll attach a link to Medtronic that has a PDF showing their restrictions on electrical equipment and EMF fields. I've found their PDF to be conservative. If you look at how close the PM needs to be to the electrical equipment before it could cause a problem you'll see that you would have to be hugging the equipment while it is running in order for it to potentially cause a problem. I don't think you'll allow your little girl to hug the sweeper while it's running.

Other reports that you may see such as the lady who supposedly died while going through an airport scanner can be relegated to science fiction and urban legends. Quite often the stories are repeated but no one bothers to check the facts. I just did a follow up search into the lady's pacemaker failing at the airport and there are no follow up stories or anything to confirm it really happened. Same for pacemakers being hacked. No confirmed reports of pacemakers being hacked. No unconfirmed reports of pacemakers being hacked either. The statement that pacemakers COULD be hacked is just that, they COULD be. It's also possible to break into a bank vault. When was the last time you heard that happening? It's also possible to get hit by a meteor but highly unlikely.

If you have additional questions about pacemakers and children please feel free to come back to this forum. About 80% of the warnings I got about my pacemaker was wrong, and that was from medical people who should have known better. Since the people on this forum live with pacemakers, we can give you accurate and up-to-date information.

Other than the initial shock, you should go on with planning what your little girl will do with her "normal" life, and then what you'll do when she starts living it. Let us know how it goes. We're always happy to hear a success story.

http://www.medtronic.com/wcm/groups/mdtcom_sg/@mdt/@crdm/documents/documents/electromagnetic-compatibility.pdf

She will be fine

by Pacemum - 2014-12-05 03:12:15

My daughter is 14 and has complete heart block and has been paced since she was a few months old. She is now on her third PM.

It is a worry to know that your daughter may need a pacemaker but she will be fine and will be able to take part in most things other children do. There will be a few things that she will have to be cautious of but on the whole there will not be much that she will not be able to do.

Hope that you get more information at your appointment. If you have any questions then feel free to ask.

Checking back in....

by wolffash - 2015-09-15 07:09:02

Thanks to you all for your kind words.

My daughter just turned five, and after about a year of checkups and watching her, the doctor has decided to pace her. She still exhibits no symptoms besides low weight-and doc says her most recent echo compared to last years was pretty much the same. However, each time she has worn the heart monitor, her heart rate has been a couple beats lower each time.

I am waiting to hear back from the peds hospital that will do the surgery-apparently they are debating whether or not to use a pacer that goes directly INTO the vein, or one that attaches outside the heart? I am not 100
sure.

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