Congenital heart block diagnoses at 22 weeks pregnant

I’m an adult with CCHB

by barnet38 - 2019-05-08 07:52:52

Hi,

I was born with complete heart block (heartbeat dropped during labor) and was able to live a pretty normal life without a pacemaker until age 17.  Prior to the PM, I had to go in for regular check ups with a pediatric cardiologist and had a couple restrictions (no soccer, but I could play other sports like softball and was in marching band).  After the PM, I have freedom to do whatever I want and no one would ever know that I have a heart condition.  I’ve had my PM for over 20 years and am very active.  I exercise regularly (Peloton - it’s intense), hike all over the US, have a demanding job, and am able to do all of that because of the PM.  There are other CCHB adults on this forum who run marathons, do CrossFit, etc.

Pacemakers run on a battery, so the generators have to be replaced occasionally.  The battery life has improved greatly in the last 20 years.  I received my third pacemaker a few years ago and it still has 11+ years of battery life.  

The PM club is a supportive group, so don’t hesitate to ask questions.

barnet38

hi

by Tracey_E - 2019-05-08 09:54:40

Glad you found us! How scary for you. However, know that it's not anywhere near as bad as it sounds. Technology today is mindblowing and CCHB is fairly easy to fix with a pacer. We have members with infants and children who are paced, or who are monitored but not yet paced. Hopefully they will say hi and tell you their stories. We also have members like barnet and myself who live full, active lives with CCHB.

I'm 52 and on my 5th pacer. Pacemakers weren't given to children unless it was life threatening when I was diagnosed so I got by without until I was an adult. To me, kids today are lucky because I grew up with a lot of restrictions, my rate never went up so sports were out of the question. Now when a child can't keep up, they get the pacer then get back to being a kid. This week will be 25 years since I got my first pacer. I'm healthy and active, have 2 kids in college, run my own business, went to Crossfit this morning then for a run after. Next week I'm taking  a dozen girl scouts swimming with dolphins and the week after that I'm helping 36 teenagers to learn primitive camping. No one looks at me and thinks heart patient. The pacer is an occasional inconvenience, but mostly I see it as a blessing, an amazing little hunk of titanium that allows me to be active. Growing up, it was a lot harder on my parents than it was on me. When we are born this way, we don't know any different so it's our normal. There's no reason to think your precious baby won't live a full, perfectly normal life. 

Children and pacemakers

by Pacemum - 2019-05-08 18:11:29

My daughter has had a pacemaker since she was a few months old. She is now  an adult as she is now 19.

It is good that they have picked your babys heart block before birth so that a plan can be in place for when your baby is born.  What they can pick up on the pregnancy scans now is amazing.

It is quite daunting  when you learn that your child has any medical issues.  There are alot of children now who have grown up from being paced from quite a young age.  The big childrens hospitals have many patients.

If your baby does need a pacemaker it should not affect them too much and as your baby grows he/she will be able to do most things that other children do.   There are a few restrictions but you can adapt around these quite easily.  Children do tend to use more pacemaker batteries than adults but this is due to their size as small children have the smaller pacemakers which have a slightly shorter battery life.

My daughter goes to college, has a little casual job and goes out with all her friends.  She had her fourth pacemaker battery implanted last January and will be raising money for the main UK cancer charity in a few months by taking part in one of their fundraising races.

Hope that all goes well with the rest of the pregnancy and birth of your baby.

number five

by dwelch - 2019-06-04 00:56:27

I also have CCHB.  Am 51 years old, was found when I was pre-teen, they didnt use to look for this, at the time I was diagnosed they didnt know what caused CCHB or so I was told.  

I got my first pacer at 19, so over 30 years with pacers, well over half my life.  Am on pacer number five.  VERY active when I got my first one and it didnt in any way slow me down.  The scary thing in hindsight is the activies I did before the pacer...Should have had a pacer sooner, should have been straight with the doc, when I told him about some of my activities he was not happy so as a typical teen I just stopped telling him, and did them anyway.  Not saying this to scare you.  Saying this to indicate that even with tech from back then it was well worth it and today its a no brainer.  CCHB is easy to fix with a pacer they have been putting them at all ages from infants on up.  they now know to look for it rather than in my case being sent to a cardiolgist because the pediatrician heard something like a murmer and the cardiologist saw something else from the ekg.  Might have been another 10-20 years before I had an ekg otherwise, or never.

I pacemaker is not something to fear...its something to be thankful for...