Congenital Heart Disease Support Group

I know of a couple of kids with 3rd degree AV block but they all have multiple congenital heart problems. That is just the people that I know, most of the babies are young with severe chd. I'm sure that there are others out there with it. I would imagine that the block would show up as a slower than normal pulse rate and an tiring quickly when playing? Maybe some fainting? That's how it shows up in adults. They usually treat it with a pacemaker, that kicks in when the pulse drops below a certain level

My son has it. He didn't have any symptoms at all. I just thought his heart rate was slow, asked the doctor, he said he's fine, asked a nurse at a clinic and was sent to another pediatrician who immediately sent him to pediatric cardiologist. He was diagnosed over a year ago. I know all the symptoms and everything. I was just hoping to discuss with some parents with children who have it the treatments and experiences.

Sorry, I can't help you there. I can tell you alot about chd, My granddaughter has hlhs, but I have worked mostly with adults with AV block

With the adults, do they all or nearly all have pacemakers?

I have a 4 year old with 3rd degree congenital heart block. His heart block is the result of neonatal lupus syndrome. (I have the antibodies for lupus & they can cross the placenta during pregnancy and cause inflammation of the AV node- resulting in the block). We found out about the block during pregnancy, at 19 weeks gestation. He is doing great. His development has always been a little slow, but I don't know that that is a result of the heart block? He sees a cardiologist yearly and we do a holter monitor test (a 24 hour test of the heart activity) annually as well. Our cardiologist has told us that more than likely he will eventually need a pacemaker. He said that it may be as he gets older and wants to be more active with sports, etc. We are hoping that we can hold out as long as possible for the pacemaker.

Thanks. My son wasn't diagnosed until he was 7 months old. I was then tested for lupus and all tests were negative. We've done the holter monitor many times and we see the cardiologist every 5 months. His cardiologist also thinks he will need a pacemaker. At the last visit, we were told that from the previous visit 5 months before to that one, he had developed mitral valve prolapse (which is leaking a little) and some fluid around the heart. So, I know what you are talking about.

Hello,

My daughter was a twin and born with 3rd degree heart block. She was a fussy baby would constantly cross and contract her arms and legs and lay on her left side and at time she would look really pale. When we explained this behavior to the doctors they dismissed it saying that 3rd blocks don't do that and sent her to a neruologist which resulted in no findings. These episodes along with the obvious decrease in activity compared to her twin made us concern. We had even rushed here to the ER many times during these periods only to have resolved be for the Dr's exam. I knew she was experiencing low blood pressure from my medical back ground (paramedic) but still the doctors dismissed my findings again saying that... "That is not in the books”!!! Well finally we were able to get her to the ER during on of this events and her rate was in the low 30's with numerous PVC's and had no readable blood pressure!!! A week later our daughter was given a pacemaker and immediately she was like a new child full of cheer, character and personality!!! She is now 11 and has been 100% pacemaker dependant and is ready for a new pacemaker. This new one is the size of a quarter and the thickness of two quarters in contrast to her current hockey puck. It is so advanced that I don't have the room to explain. My advice is to follow your heart and don't let the doctor down play your concern. Actually on that last ER visit before the pacemaker we refused to allow her pervious cardiologist to see her demanding a new one who has turned out to be the best... and we have seen a few.

Good luck
Charles

Thanks. It was our old pediatrician who dismissed us. The cardiologist we have now it WONDERFUL!!

Sorry....Our cardiologist is great. He took us in during all the tests and literally showed us on the Echo and EKG where the problems were. He had diagrams, models, everything. I leave there every time feeling confident. He is very thourough with the Echos. All his patients love him. What I like about him most is that he remembers all our names, even when I bring other family members with us. We feel very informed and lucky to have him.

My daughter has CHB and was diagnosed when I was six months pregnant with her. The doctors took her two weeks early and put in a pacemaker when she was 4 days old (her heartrate was 42). She did have a rough go in the beginning, but she is 7 years old now, fixing to turn 8 in a little over a month. She is doing great. Most people can't tell she has anything wrong with her. She gets her pacemaker checked about every 3 or 4 months. Her only problems with the pacemaker were in the first 3 months of her life. With the first pacemaker she had, she got an infection in one of her incisions (by the pacemaker) and it had to be removed. She has quite a few infections after that and was in the hospital for 2 months. Since then, doing good. She has had 12 surgeries, most to do with her condition. We know about every 4-5 years, she has to get the pacemaker changed. You would be surprised at how much stronger our kids are compared to us:)