Cogenital Heart Block

Pacemakers and sports

by AgentX86 - 2018-09-22 20:23:48

AFAIK, only full contact sports are on the not-recommended list.  Tackle football and rugby would be out but I wouldn't (didn't) let my son play football some 35 years ago, without the added complication of a pacemaker.  Baseball is about like competetive paint drying, so it should be OK.  ;-)  Certainly track, basketball, and swiming would be just fine.  I think it's a little early to be worrying about what his interests will be a dozen years from now, though.  But please, please, please, treat him like a normal child. 

The worst thing you can do is be an over-protective, controlling, helicopter parents. My grandaughter was born with the aorta and puminary arteries swapped, so had major open-heart surgery when she was two days old.  The best thing my son and wife are doing for her is to forget it and treat her like a normal three-year old brat (but there lies the problem ;-).

living with CCHB

by Tracey_E - 2018-09-23 09:41:39

I was diagnosed in 1970, at that time they wouldn't consider a pacer for a child unless it was life threatening, so I got by until my 20's without. For me, that meant no sports or strenuous activities growing up. Kids today are fortunate, as soon as they can't keep up, they can have it fixed with a pacer then get back to being a kid. 

Full contact sports like football and martial arts aren't recommended, but there are protective shirts available so it's not completely off the table. Baseball and other sports are totally fine, and encouraged. Most of us lead normal, healthy, active lives. If we have to have a heart condition, we have a good one because the heart is usually structurally normal and the pacer fixes the electrical short circuit. Every time the atria beats, the pacer makes sure the ventricles also beat.

A member here, Uvagershwin, was paced when she was two days old. I haven't seen her around here ages, but we've become friends so have stayed in touch. She recently graduated college and is now an RN. She leads a normal life. As a kid, she attended Camp Odayin, a camp for kids with heart conditions. When she got older she was a counselor there. http://campodayin.org/

With kids they usually start with the pacer in the abdomen. They leave room with the leads for the child to grow, but they will still outgrow them at some point. When they get to early teens, they are usually big enough to have it moved to the chest, where most adults have it. So, you'll be looking at lead and device replacements several times as your child grows up. The rest of the time, life goes on and we just have the occasional check up. Growing up, I had annual appointments. Once I got the pacer it became quarterly. My newest one came with a home monitor so now the quarterly reports are automated and I only go in once a year again.

I'm turning 52 this week. There is nothing I want to do that I cannot and no one looks at me and has any clue my heart is dependent on a little computer. I lead our church's youth group, yesterday I ran a 5k with them.  I do Crossfit most mornings, hike or ski every vacation, never pass  up a chance to kayak. My ep encourages me to do whatever I want so I don't hold back. My heart doesn't define me or keep me from living life to the fullest. 

born wit it

by Shell - 2018-09-23 16:55:45

I was born in 1971 and I think they diagnosed at 6 mos with CCHB. (they realized when I was in my 20's that my mothers Lupus probably caused it. She wasnt diagnosed with it until I was 11) 

Like Tracey said, at that time they wouldn't pace a child unless absolutely needed. I did see a cardiologist every 6 mos growing up and knew that at some point I would need a pacemaker. Unlike Tracey I didn't have any restrictions. I did dance when I was little, played baseball and basketball. In high school I was a cheerleader. (at that time my heart rate was around 40)

I got my first pacemaker at 34. That was after I had my 2 sons. (they're 18 and 21 now) I had a natural delivery. With my 1st they considered me high risk and my cardiologist wanted my to get an epidural. (no problem) With my 2nd I was able to see the mid-wife (they syill deliver in the hospital in case there's an emergency) and wasnt considered high risk.

Hope every thing works out with your son.

Shell

by Tracey_E - 2018-09-23 17:51:36

Looking back, I think my pediatric cardiologist was uber conservative, more so than most of his colleagues. He was afraid that if I overdid it, I'd end up needing the pacer too soon. By the time I was in my teens, they'd come a long way and I would have done better with one, I think, but he was still of the mind to put it off as long as possible. He also said I'd probably never be strong enough to have kids. I have two, normal deliveries and not high risk pregnancies, though I did get the pacer first. Sometimes I want to go look him up and have a chat with him! He'd probably have a heart attack knowing half the stuff I do now lol. 

Thank you

by Kstabeno - 2018-09-23 20:48:02

Thank y'all for the feedback. Means a lot. My mother has lupus too. That is where I got my auto immune disease from. I really appreciate everyone sharing their stories. Thank you :)

another patient

by dwelch - 2018-09-28 04:22:43

Like the others that responded I was born with CCHB.  Was found in my pre teens and my first pacer when I was 19, am 30+ years with pacers am on pacer number five.  Going to turn 51 soon.  Very happy I have one and knowing what I know now should have done things differently.

Unlike TraceyE and others perhaps I was very active and althletic, when my doc got upset with me because I did a half century (50 mile bike ride) cold turkey, I was a bmxer that worked at a bike shop, borrowed a bike, road around on it the couple of days before (found out you shouldnt train the day before).  Well the doc was not happy with me "people with your condition die doing something like that".  So I simply didnt volunteer any info after that.  I did quit soccer when a pre-teen and they first found it but BMX, skateboarding, and other activities which all should have killed me...didnt.  Continued to be that active until a desk job slowed that all down.  So dumb luck.  very dumb luck im still here.  I should have either gotten the device earlier or cut back or stopped the activities.

As with the others above my first device predates the world wide web, this site was not even a possibilty or something we could have imagined for a very long time.  I truly dont know how my folks got through this I think we all just trusted the doctor.  And that is my most important statement find a doc you trust, and trust the doc you found.  Just roll with it.  Today for many reasons they look for this before and after birth.  Now the other folks can correct me but my first doc couldnt answer what caused it my mom spend a couple decades thinking it was because she opted for twilight sleep when I was born.  My second doc as I was in a relationship and considering parenthood at the time told me that years after my first finding out about my condition is when they connected it to autoimmune disease in the mother at the time of the pregnancy.  And 30 years give or take after they first found it, had a visit with a doc who had an intern who was excited because he saw this on my chart, wasnt a heart doc at all, but had just been through school and knew the condition and remembered the where it came from, had gotten that answer right on the test.  So we were pretty uneducated going into this and there werent the resources we have to day.  You are very fortunate not only beause of the internet, and this site, but because they look for this at birth and like the others that responded above have many years to prepare for the eventual day. As you and later your son visit resources like this site you find that a lot of the folks with pacemakers had a really bad day with an ER visit and woke up with one or got one within a few days.  CCHB folks may have years of warning before the eventual first pacemaker.

The statistics on our survival pre-pacmaker technology, was really bad, the statistics now are that it aint no thing you get your first pacer when you are young and complete heart block is super easy for a pacemker to deal with.  It literally fixes you, the problem is a broken electrical connection between the upper and lower chambers they operate out of sync which is bad for the heart.  The pacer fixes this and if heart block is your only issue then you are done, fixed.

Now sports.  I did give up soccer not that I wanted, to.  The doc and folks said well you can play goalie. I did that for a few weeks and simply quit, done.  But moved on to BMX which basically you burn all you have in a minute or so, probably not a good thing to do with heart block. Skateboarded vert ramps, snowboarded, water ski, whatever I wanted to do, took a bike off the wall and rode 50 miles one hot morning in the new mexico desert.  Pre-pacemaker.  Post pacemaker stuck with the skateboarding and snowboarding the bmx bike got me to and from class, the desk job that followed slowed those things down to a crawl. 

But I remember when I got my first one pacers were becoming a lot more common and I my mom told me a pro football player had one and I think they put it in a place that wasnt a problem.  Honestly I have not reasearched this but you can and your doc should already know.  I do know that falling from 10-15 feet or more on a vert ramp dozens of times a day or slamming into the ramp at 20 miles an hour...id call that a contact sport and had no issues with my pacemaker.  Granted I wasnt wearing nor using nor banging on pads that were on top of the device. 

I personally do not see why a pacemaker would in any way affect other sports that dont involve constant contact with the device.  Like american football, hiking with a heavy backpack might not be in his future either, but baseball, soccer, skiiing and countless other sports are just fine.  As with walking down the street minding your own business if you get bumped in the shoulder, unprotected is that worse than hard plastic over a pad?

And trust me, playing a sprot like baseball, tennis or other, or not a pacemaker patient very quickly developes a defense mechanism for protecting the device, after the first time you bump it you are quick to protect it from that day forward.  The device is tougher than the flesh that sits over it, while you can break a lead you are more likely to hurt yourself, but in either case you just make an appt to see the doc or go to the ER. 

I am rambling as usual.  I very much feel for you as parents, i am a parent, as a parent I wonder how my folks dealt with this without any resources other than the doctor.  Medicine in general and in particular in this area are signifantly better today than when I went thorugh it.  I expect your son will be having regular echocardiograms or some other tech that will let the doctor see how the heart size and muscle are dealing with the heart block, that is one way to tell when it is time.  My heart rate was always very low pre-pacemaker mid 40s at rest and 30s when sleeping (well there was only one time they measured that and that was the night before the procedure, why I spent the night there dont know, wonder if they do that now).  They thought I had an athletes heart for many years unilt I saw my first cardioloist.  

Oh so saying all that about sports, I do not think it was good that I did those things pre-pacemaker.  Nor should you run out and get one prematurely so that he can do all those things.  Talk to your doctor, they do put these things in kids but there is a difference between placement etc in a kid vs someone who is full grown.  My oldest active lead is over 30 years old and am still using the same pocket as my first pacemaker.

Living with a pacemaker is easy, in the long run you really shouldnt worry.  Make all the appointments the doc asks for.  Have the doc or tech show you on the ekg a heart block from a normal person.  Your childs other doctors will all listen to his heart after reading his chart, think of this as real world training for those doctors.  They dont hear this every day if they can even hear a difference.  Maybe someone gets saved because they heard your childs heart vs what they hear every day.   I felt like a lab rat those pre-pacemaker years, but in hindsight I should have thought of it differently. 

Starting this young at the regular visits will hopefully prepare him to continue to go to these appointments for the rest of his life.  ist really just an hour or so a year and a surgery with a few days to few weeks of recovery every 10 give or take.  He will always be the cardiologists youngest patient, he will retire some docs if he stays in the same town and sticks with that doc.   And with having the internet and other resources his whole life will know more than TraceyE or myself when he is 50 about the heart and pacemakers.  

His heart will be the least of your worries.  And he is brand new, you have lots and lots of time and fun baby/parent stuff before you have to worry about what kind of person he wants to be once he can walk and run, what kind of activities. He has to figure out how to get his hands and feet into his mouth, and learn that feet and hands are different and have different jobs, how to eat how to walk, talk, read...

Please keep coming back or looking around the site, as someone whose parents went through this I hope that you can both find and help other parents in the same situation.  Here or at other sites or forums.

As a kid with a pacemaker

by Buzbuz9 - 2018-10-08 19:26:08

So I'm currently 18 I will turn 19 at the end of this month and I have had a pacemaker since I was 7 months old. I can't tell you what you'll face as a parent but I can assure you that your kid will be able to have a normal childhood. When I was little I played soccer, and softball. There are lots of good sports options available to kids with pacemakers. The only real hard part is the surgeries and scars. Depending on what age your son will get a pacemaker he might have a rather large and intrusive abdominal scar. Mine is over a foot long and almost a centimeter wide. Growing up I broke my leads twice, and when you're a child you can't have in intravienal leads, so your battery runs out much faster. I am currently on my 7th pacemaker, but the first six all happened before I was 9. I can't imagine the struggle you're going through as a parent, but I can assure you that your kid will be as healthy and happy as they can be, and that getting pacemakers definitely the right decision if the doctors recommend it.