Compete AV heart block

congenital av block

by Tracey_E - 2018-12-12 11:00:34

Welcome! I'm sorry for the circumstances but glad you found us. We have a few teens who have been paced since childhood as well as some parents of paced kids, hopefully they will say hi. What's ahead for your daughter is a normal life. 

I have congenital complete av block also. I'm 52 now and lead a healthy, active life. It was different for me because when I was diagnosed (1970) pacers were new and nothing like they are today so they didn't pace kids unless they had to, so I had limited stamina until I got that first pacemaker. Now when a child with heart block can't keep up with the other kids, they fix it with a pacemaker and let them get back to being a kid. I'm on my 5th now and there's nothing I want to do that I cannot. I am a mom of 2 (normal pregnancies and deliveries), do Crossfit 5 days a week, am training for a half marathon in January, have a ski trip planned in February, taking my Girl Scouts (5th and 6th graders) camping in March.  I got a home monitor with my newest pacer so I only go in once a year now for appointments. I went quarterly before. The rest of the time, I don't even think about the pacer much. 

The greatest gift my parents gave me was treating me like a normal kid. They focused on what I could do, never what I could not. As a parent myself, I have a better understanding of what they must have dealt with when I was diagnosed, how they must have wanted to wrap me in bubble wrap. They never once let me see their fear or treated me like I was fragile, and as a result I never thought it was a big deal. Know that this is many times harder on you than your daughter. When we are born this way, it's all we know. Kids don't think things through or worry about the future. I knew my heart didn't beat like everyone else's but it never occurred to me that was a bad thing, it just was me.

I don't want to say there weren't bumps in the road, because there were, but overall I had a normal happy childhood and grew into a happy, well adjusted adult. The thing that bothered me most was being different, being singled out.  I never cared that I got too tired to run with the other kids, but I hated when the teacher told me to go sit down in front of everyone. When we have something rare, teachers and others who don't understand what's going on and what our limits are will usually go overboard trying to protect us. Which is a good thing! But when I was a kid, I didn't see it that way. On the other hand, I may have occasionally milked it. If there was something I didn't want to do, I learned young that all I had to do was say I was tired and I got out of it. Silver linings and all that! I used to look forward to doctors appointments because I got out of school for the day and got to go out to lunch in the city with my mom. The staff at the hospital was always so nice and made it all a game so I don't have any bad memories associated with that. Kids pov is different than adults!

I've never once been told this will shorten my life. There's nothing I want to do that I cannot. Once a year I spend a day getting tests. Every 7-8 years I get a new device. Last one, I was home by noon and answering work emails that afternoon. I've always believed with all my heart (no pun intended lol) that there are a lot of worse things to have.  Wishing you a smooth pregnancy and a wonderful life with your precious daughter.

me too

by Shell - 2018-12-12 17:09:22

Like Tracey I was born with congenital complete heart block. Also like her I wasn't paced as a child because it wasn't the norm to do. (I will be 47 in one week) Growing upmI always that at some point I would need a pacemaker. That happened 12 years ago.

What I liked about about my parents they never restricted me from doing anything. (the doctors had no resrictions either) I played baseball, basketball and was a cheerleader in high school. At that time my heart rate was around 40, never went up no matter what I did and did go down a little at night. I had both of my sons pre pacemaker. The first prgnancy they said it was high risk because they didnt know. With my 2nd it wasn't because my cardiologist said I was fine. (the only thing he wanted was for my to have an epidural. No problem) 

With all the advances that have bee made your daughter should have a full and active life.

Thank you

by Brimomma95 - 2018-12-12 17:35:16

I was highly worried about what impact it may or may not have in her future daily life. She has 2 older sisters. I was born with a heart murmer and i remember people trying to tell me i can't do This or do that because of it. I don't want that for her. But i know it's very rare and most babies don't make it from the womb. She's a fighter though. 

limits

by Tracey_E - 2018-12-13 14:23:55

She is going to have people in her life telling her what she can't do because of her heart, that's a fact of life and we can't control it. Sometimes it will be legit, sometimes it will be overprotectiveness. All of it will be with good intentions and her best interest at heart. We can't control others, but we can control our reaction to it, and that's a lesson you can teach her.

She's going to learn some life lessons a lot younger than her sisters and her peers, but that's not necessarily a bad thing. We are tough, we are more empathetic, we learn to sift out the garbage and focus on the positive, we learn we aren't immortal and life is a gift, we learn that someone else always has it worse. Something good comes of everything. She's got a mama bear and two big sisters in her corner. That's a pretty darned solid start. No one has a perfect life, even if their heart beats the way it's supposed to. 

Congenital heart block

by EilishBow - 2018-12-15 17:59:10

hey! My name is Eilish and I am 22. I have congenital complete heart block. I was born with it (doctors think!) but it wasn’t discovered until i was 11 years old. I had a one lead pacemaker fitted at the Royal Brompton hospital in London and was out in time for Christmas ! Which young me was very pleased about. Then 2 years ago I had a second lead put in and my pacemaker battery changed. 

Being a child with a pacemaker is different, but it never ever stopped me. If anything I felt special! And I still do. I’m sure you must be afraid but your baby will be perfect. Things like this make you stronger as a person. I wouldn’t be who I am today without my pacemaker. I have just finished my degree and I am now a paramedic. Nothing has stopped me, but my pacemaker has taught me how to be brave, thankful and to keep on carrying on. It puts life into perspective and helps you to be kinder, happier and enjoy the little things. 

Much love. Eilish x 

me too

by dwelch - 2018-12-19 12:41:38

I was born with complete congenital heart block.  I am from Tracey_E's time frame, am 51, on my fifth pacer.   My problem was not found until early teens, and was just a regular checkup my pediatrician heard something sent me to a cardiologist and the ecg showed I had a block.  Pacers were not yet common.  I was 19 before the doc said its now time we need to do this.  I had been very active and in hindsight very lucky.  Didnt know I was gambling with my life.  31 years with pacers.

BEFORE the pacer after we found out I was restricted from doing things  or at least so my doc and parents thought, organized soccer basically.  Had to give that up, which was rough.  AFTER, she is going to be just fine, quite normal.  heart block is super easy for pacemakers it just has to complete the weak or broken connection.

she will always be the youngest patient in that doctors office.  she will have this extra doctors visit every year.  surgery every ten years give or take, no big deal, I think traceye reported as did I my last one I was ready to go to work a couple days later.

Please stick around this site, there are some other parents in your situation.  I really have not gotten the "how did you feel" about this from my folks.  How did you make the decision, etc.  That answer was they trusted the doc.  A side note that is most important to me, I trust my docs.  I have moved and changed them. and have only really had to get rid of one of them and find another.  In the long run I am still here, the pacer never slowed me down, was very active in sports until the desk job and life happened and that is not an excuse.  So its my fault I am not active not the pacer in any way shape or form.

She will retire I would say a few doctors, I retired that first one, he was my dads age.  My current one, who knows maybe before the end of pacer number five if this one makes a full run on its battery, if not by the end of the next device.

As mentioned there are some folks here that started very early and the early pacers if I understand right are not put in the shoulder where they are as an adult.  removing old leads if they break is not that big of a deal anymore.  when I started and one of my first leads broke, it was.  Those folks can help you and your daughter with what to expect.  

Ask lots of questions, trust the doc.  Ideally you want an EP for the year to year checkups and a good surgeon for the procedures.  It is worth driving or flying to the next big town if that is what it takes.  While the folks at this site have more actual real world living with pacers experience than any one doc will every have.  The doctors are actual doctors we are not, we have our opinions and things we have dealt with, but at the end of the day the doc is who is caring for her directly.  Find one you can have a conversation with who can understand and answer your questions in a way you can understand the answers.  And trust him/her's practice to have a surgeon, to pick the devices, etc.

do not get concerned over the battery life estimate they tell you during a checkup.  she will get new devices over time, and thats good they get smaller and have more features.  because the connector size is common, I think years ago we already hit about as small as we may see, they could get a bit smaller but the connector is dominating the size for some of the applications.  They may want to give her some larger ones to push 10+ years and over the course of her life have one or more fewer surgeries and devices.  This is all fine and normal.  They might start with this day one.  I have no idea.

Realistically she may very well not be able to be a welder nor work with high power, power stations and the like as a career.  But other than that no problems, the thing makes you normal, esp with heart block, easy to fix with a pacer.  She can run and play and do sports and swim and all of that, grow up healty and do almost anything.  When she gets old enough please have her join in the conversation.  Both of you have and will have valueable experience for the parents and patients that follow...