CHB

Hi my baby boy was diagnosed with third degree CHB when I was 24 weeks pregnant. My son is now 4 months old and his heart rate ranges from 40-60 bpm. He is having a.very hard time gaining weight and has been hospitalized twice because of.it despite a high calorie intake.. he tires very easily and sweats alot while doing simpliest things. The cardiologist keep upping the calories but we havent seen much results. His hands and feet often turn blue but yet they still insist on waiting for the pm. I guess what Im wondering is how he is.feeling? or if anyone has had similar stories. Or if anyone has heard of waiting too long for pm causing damage to other organs and brain. I just want him to have good quality of life and he just seems uninterested and sleepy. I know a pm now would mean longer recovery but maybe a better life!! just frustrated because it seems like they are waiting for something bad to happen :(

1 Comments

Concerns About Son

by SMITTY - 2011-12-06 10:12:25


Hello Mjolin,

I'm certainly no expert on heart problems for anyone, let alone babies, but I did help my wife (a little) raise three boys. The No. 2 son (now 59) had a heart deficiency and I recall well the trauma we experienced trying to get him the help he needed. We were successful as he is still with us and healthy, I might add.

Now let me say a word about what I think regarding your son's problems. Yes his heart rate is lower than what would be normal for a baby his age. My guess is the low h HR is the reason he sleeps a lot and gets tired easily, I don't know about the sweating. Our son had what the Dr called, among other name, cardiac deficiency and when he was less than a year old he too would have blue extremities sometimes, which we took to be caused by low blood flow. Yes he was also thinner than the other two, but I can't say we ever connected that to his heart problem.

As for why the Dr wants to wait is because implanting a pacemaker in an infant is a little more complicated than an adult getting one. I'm reasonably sure the implant would have to be in the abdomen and recovery time would no doubt be longer than the 3days to 3 weeks for the adult that gets one implanted under the collar bone.

As for damage to other parts of the from having to wait too long for the PM, I would not worry about that. The body has amazing recuperative powers. Any organ being short on blood supply now, if even there is one, would catch up after the problem is corrected. The fact your son is lethargic and sleeps a lot is his body's way of compensating for the low heart rate and that in itself will go a long way in protecting all parts of the body at his young age.

Now my $64 question? If you feel this Dr is not doing as much for your son as is needed, can you take him to see another Dr?

I wish your son the best,

Smitty



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At age 20, I will be getting a pacemaker in few weeks along with an SA node ablation. This opportunity may change a five year prognosis into a normal life span! I look forward to being a little old lady with a wicked cane!