Conference turris::womannotes-v3

758.0. "children and pacemakers?" by CLARID::HOFSTEE (Take a RISC, buy a VAX) Wed Apr 03 1991 19:15

Our daughter ,Vanessa, was born 19-12-90 with a problem with her heart. 
Without going into too many details, the doctors decided that they had too
implant a pacemaker because her natural heartbeat is around 50. With the
pacemaker they will bring it up to around 100. The first operation failed,
because the pacemaker they implanted turned out to be too big (she was only
2 kg 400 when she was born), so they had to remove it. After two more 
operations , they finally implanted another pacemaker this week which 
weighs 20 grams and lasts 10 years. The doctors told us that they phoned
all over the world, to find the smallest pacemaker they could find and they
also took advice all over the world how to handle this case. When we asked,
how frequent such a case was, they answered that it certainly wasn't very
common, but also not unique. However, after the first failure, we really
start wondering how exceptional this case really is. We have bought some
books about pacemakers, but all of them talk about pacemakers on adults, and
most of them only on the technical details of the device, but not on how do
you LIVE with a pacemaker. So I am posting this note, in the hope to 
reach a large audience and get as many 'first hand experiences' from people
that are actually living with a pacemaker, or even better , experiences
with pacemakers on children (or even more rare, baby's).

So my questions are:

-Do you know of anybody who has a child with a pacemaker and what age does
 he/she have

-how does he/she live with the pacemaker. What things cannot she do or should 
be avoided. 

-How long do you have the pacemaker

-Any other useful information on the do's and don'ts for people that live
with a pacemaker?


Any info is highly appreciated.

Timo

PS: After almost 4 months continuously in the hospital, Vanessa is recovering
now from the last operation. See weighs now 4 kilo's and we hope that the
operation has succeeded this time . We really hope to have her at home
before the end of april. I'll keep you posted.

(Posted in mennotes and womannotes)

    please see also (and maybe crosspost if you like to):
    
    Parenting_V2
    333 - baby heart problems
    482 - heart update to note 333
    973 - fetal heart rate
    1348 - VSD - heart defect
    
    Medical
    98 - pacemakers
    609 - open heart surgery
    723 - info re. heart surgery
    798 - pace maker info pls.
    
    
    -Jody
    

Thanks a lot for the pointers!

T.    

    I'll be praying for her. please excuse my ignorance but how much does
    she weigh in pounds?
    
    Kate

        1 kilogram = 2.2 pounds
        
        Rounded to the nearest ounce, the figures in .0 are:
        
2 kg 400 when she was born	==> 5 lb  4 oz
She weighs now 4 kilo's		==> 8 lb 13 oz
        
        Dan