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| Title: | Parenting |
| Notice: | READ 1.27 BEFORE WRITING |
| Moderator: | CSC32::DUBOIS |
|
| Created: | Wed May 30 1990 |
| Last Modified: | Tue May 27 1997 |
| Last Successful Update: | Fri Jun 06 1997 |
| Number of topics: | 1364 |
| Total number of notes: | 23848 |
816.0. "children(babies) and pacemakers?" by CLARID::HOFSTEE (Take a RISC, buy a VAX) Fri Apr 05 1991 08:13
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.
(I checked the parenting_v2 notesfile but didn't find any specific info
on this)
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,parenting ,medical and womannotes)
| T.R | Title | User | Personal
Name | Date | Lines |
|---|
| 816.1 | | MAMTS5::MWANNEMACHER | Just A Country Boy | Fri Apr 05 1991 11:16 | 11 |
| Timo,
Sorry to say that I do not have any info on pacemakers, but just to
give you and your family support and let you know my prayers are with
Vanessa, you and your family.
Peace,
Mike
|
| 816.2 | You're in my prayers | EXIT26::SULLIVAN | | Fri Apr 05 1991 11:42 | 12 |
| Hi Timo,
I had an uncle that lived with a pace maker for 13 years. He died
recently, but not due to his pace maker. The pace maker never kept him
from swimming, and playing sports with his sons. I think that he just
had to make frequent appointments to his Dr. to check on it.
I hope that everything works out well for Vanessa. She is in my
prayers.
Donna
|
| 816.3 | Living with a Pacemaker | GIAMEM::DOUGLASS | | Tue Apr 16 1991 15:57 | 35 |
|
My husband had a pacemaker implanted 2 years ago at the age of 24. I
can imagine how traumatic this must be for you, since it was very scary
for me having this happen. My husband's natural heartbeat was in the
20-30 bpm range and the pacemaker brings it up to 40. His pacemaker will
last him 6 years and the doctors said that by that time, they will
probably have developed pacemakers that last 10 to 20 years. They had
problems implanting the operation and he went into cardiac arrest (it
is true that doctors consider pacemaker implants to be a very simple,
uneventful surgery but as we experienced and you experienced this isn't
always the case). However, now that the wires are in his heart, replacing
the pacemaker will be a simple outpatient procedure.
The doctors feel that he will probably need to always have a pacemaker.
They said it is hard to know how much your heart has come to depend on
the pacemaker and it could be dangerous to remove it. However, I did
read an article about a young women who had a pacemaker removed after
some time. I'm sure it depends on the case.
There are no problems at all living with a pacemaker. There are some
things he cannot do - welding or being near large electrical forces
such as a power plant would not be good as they can reset the
pacemaker. He also cannot hunt (he didn't anyway) because the
pacemaker is implanted below his right collar bone. He is extremely
athletic, and was back to racing his bicycle 2 weeks after getting the
pacemaker. The pacemaker is tested every other month. He has a small
machine that the phone hooks up to. The testing company calls at the
scheduled time, gets a reading, and mails it to the cardiologist.
I know that this doesn't help as far as needing information about
pacemakers in children, but I wanted to let you know from the point of
view of a young, athletic person, having a pacemaker really has no
negative effects on someone's life once you get used to it.
Nancy
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