Infant elective surgery

In my mind, this isn't quite elective. I mean, of course you can chose not
to do it -- you can chose not to do any surgery. But to me, elective would
be to pin back his ears or remove a strawberry spot or something. What you
are talking about is a quality of life issue. If the surgery is considered
simple and easy by doctors, and will greatly improve his quality of life,
then I would have it done.
--

Jamie
Earth Angels:
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Addison Grace -- 09/30/04

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"carlye" wrote in message
oups.com...
Hi all. I have on and off been a frequent poster on both MKP and MKB,
but since MKB is all but a desert wasteland these days (you think MKP
is lacking in posts!) and I have never posted on misc.kids, I thought
I'd just see if any of you have some information or advice for me.

I was wondering whether any of you have opted for elective or quasi-
elective surgeries for your babies (while they were still babies) to
make their lives easier later on, how you decided to do it, and
whether you have any regrets.

DS (9 mo old) has compression of his trachea by the innominate
artery. When he was first born and for about the first 3 or 4 months
of his life, this caused a nagging cough. I posted about it several
times while we were trying to figure out what was wrong with him. For
the last few months, the cough has become less frequent, but he has
difficulties with his breathing when he is active. His regular
pediatrician said he'd probably grow out of it, but a specialist in
the field told me that although surgery isn't "necessary," DS's
trachea will never fully heal, and he will suffer limitation of
activity through his life if corrective action isn't taken. We are
going to the Mayo Clinic next week to see more specialists, and their
diagnosis/prognosis may be more or less optimistic.

Surgery would require opening DS's chest and removing and reattaching
the innominate artery from and back onto the aorta. Sounds terrifying
to me, but they say it is fairly simple for a skilled surgeon. DH has
developed the attitude of "Who cares if he can never run or play
sports?" But I don't want my kid to not be able to be a kid.

Anyone faced a similar quandary? I know I'm getting ahead of myself,
but I've been told that if surgery is recommended, they may want to do
it immediately next week, so I'm trying to get it all clear in my
mind.

Thanks.

-Carlye
DS 6-2-06
DD 9-29-04

But I think a surgery that major is better to perform on a baby than a 10-12
year old child. Babies recover amazingly fast from surgeries, whereas
children are slower. A 10-12 year old child is going to be in excrutiating
pain for a week or two after the surgery, and yet babies and toddlers are
often up the next day, scooting about, smiling and trying to get out of
their beds, etc. So if you both agree that this surgery is something you
want to do, then I'd try to get it done as young as you can safely. It's
also not an unreasonable proposition to search out the pediatric surgeon who
has done the most of these surgeries, and see if you can get them to do it,
rather than the guy at your local hospital who may not have done as many,
you know?
--

Jamie
Earth Angels:
Taylor Marlys -- 01/03/03
Addison Grace -- 09/30/04

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"carlye" wrote in message
ups.com...
On Feb 28, 11:33 am, Puester wrote:

I suspect DH's opinion is guided by fear of the surgery and that's
natural, but long-term benefits for the child should also enter into the
decision.


Oh, absolutely. DH and I are both focused on protecting our son and
doing what is best for him. DH has said he can't stand the thought of
surgery on our little boy, that certainly a lifetime of physical
limitation is better, and if not, he thinks we should wait until DH is
much older (like 10 or 12, he said).

I think that if surgery is the answer, sooner is probably better, but
I, too, am terrified about the thought of it. I mean, breaking his
ribs to enter his chest cavity, moving a major artery -- it's almost
more than I can stand to even think about. And that's really why I'm
writing -- it's not like this surgery is a "nothing" deal. His
condition is very rare, and this surgery, though "simple," is not
minor, by any means. If he needed surgery on his legs or arms, I
don't even think I'd hesitate. But it's his heart. My little man's
heart. There are obvious risks a lot bigger than unpleasantness and
worry, and I just can't even think about it rationally.

Thank you for your comments, though. You and Anne are both thinking
along the same lines as me.

-Carlye
DS 6-2-06
DD 9-29-04

Hi Carlye

I'm so sorry you're having to make this decision, I (thank G*d) have never
had to make a decision like that, and I can't advise you at all what to do,
I can only give you thoughts (not a lot of help I know - sorry ).

If it was me, and it was considered to be more beneficial than harmful and
would give him a better quality of life, then I think I would have to go for
it. It would break my heart to do it, but I think it would be easier on a
baby that wouldn't remember it, and that wouldn't be scared beforehand. The
one thing I've leant is that babies bounce, and when Jessie had her hand in
a bandage (not the same at all, I know) it didn't bother her or impair her
as much as it would an older person.

As a couple of others said, I could only do it if I knew that it was a good
children's hospital and what exactly the risks and benefits were. As you
say, he's having some breathing difficulties when he's active. If he's
anything like Jessica, he'll be getting more active by the day, and as
they're babies, there's not a lot you can do to (nor would you want to)
restrict their movements.

My only advice would be to find out everything you can and go through it all
thoroughly with your DH until you can come to an informed agreement. I'd
class it as major surgery, and if you want more time to think it over, then
make sure you ask for it.

Ultimately, if it was me, I'd put myself in my child's position in 10 years
time and decide if I wished Mum and Dad had said yes or no to the surgery.

Good luck honey, whatever you decide. It's good to see you back, but a shame
it's under sad circumstances for you.

Lucy x

"carlye" wrote in message
oups.com...
Anyone faced a similar quandary? I know I'm getting ahead of myself,
but I've been told that if surgery is recommended, they may want to do
it immediately next week, so I'm trying to get it all clear in my
mind.

Thanks.

-Carlye
DS 6-2-06
DD 9-29-04

Though I'm not in your situation and may feel differently if I were, I feel
like I would have the surgery. Having a tracheal issue like that sure seems
like it would impact his quality of life, especially if it got worse over
time.

Cutting open an infant's chest and performing surgery on his aorta is
certainly nothing to sneeze at, but like you said, it's something that
cardiothoracic surgeons do multiple times a day. That doesn't make it any
easier for someone to do it to YOUR child, but still...............

I'll be interested in hearing what the mayo clinic has to say. Good luck,

--
laurie
mom to Jessica, 5.5
Christopher, 3.5

On Feb 28, 4:06 pm, "Jamie Clark" wrote:
But I think a surgery that major is better to perform on a baby than a 10-12
year old child. Babies recover amazingly fast from surgeries, whereas
children are slower. A 10-12 year old child is going to be in excrutiating
pain for a week or two after the surgery, and yet babies and toddlers are
often up the next day, scooting about, smiling and trying to get out of
their beds, etc. So if you both agree that this surgery is something you
want to do, then I'd try to get it done as young as you can safely. It's
also not an unreasonable proposition to search out the pediatric surgeon who
has done the most of these surgeries, and see if you can get them to do it,
rather than the guy at your local hospital who may not have done as many,
you know?

I will add that Grant's recent surgeries at 16-17 months have been
harder on him that the ones done at birth, three and 7 months.
They've all been for shunt revisions (and two placements). Babies are
VERY resilient.

I also think Jamie makes an excellent point that you'll be improving
the quality of his life, so it reallly isn't just as elective.
Needless to say, it's a tough decision to make for one's child. My
thoughts are with you!

Joy

Thanks, everyone, for your comments and encouragement. Assuming the
crazy storm blowing through the Midwest doesn't keep us from getting
where we need to be, we'll find out Monday or Tuesday what the doctors
recommend.

Last night I was watching DS scoot around on the floor, and I got so
emotional -- couldn't imagine him not being able to run across the
room and play like his older sister, yet I can't imagine him bruised
and stitched up... or worse, which is obviously where my mind goes.

Anyway, thanks for all the kind words. I'll let you know how it turns
out.

-Carlye
DS 6-2-06
DD 9-29-04

On Mar 1, 2:45 am, "carlye" wrote:
Hi all. I have on and off been a frequent poster on both MKP and MKB,
but since MKB is all but a desert wasteland these days (you think MKP
is lacking in posts!) and I have never posted on misc.kids, I thought
I'd just see if any of you have some information or advice for me.

I was wondering whether any of you have opted for elective or quasi-
elective surgeries for your babies (while they were still babies) to
make their lives easier later on, how you decided to do it, and
whether you have any regrets.

DS (9 mo old) has compression of his trachea by the innominate
artery. When he was first born and for about the first 3 or 4 months
of his life, this caused a nagging cough. I posted about it several
times while we were trying to figure out what was wrong with him. For
the last few months, the cough has become less frequent, but he has
difficulties with his breathing when he is active. His regular
pediatrician said he'd probably grow out of it, but a specialist in
the field told me that although surgery isn't "necessary," DS's
trachea will never fully heal, and he will suffer limitation of
activity through his life if corrective action isn't taken. We are
going to the Mayo Clinic next week to see more specialists, and their
diagnosis/prognosis may be more or less optimistic.

Surgery would require opening DS's chest and removing and reattaching
the innominate artery from and back onto the aorta. Sounds terrifying
to me, but they say it is fairly simple for a skilled surgeon. DH has
developed the attitude of "Who cares if he can never run or play
sports?" But I don't want my kid to not be able to be a kid.

Anyone faced a similar quandary? I know I'm getting ahead of myself,
but I've been told that if surgery is recommended, they may want to do
it immediately next week, so I'm trying to get it all clear in my
mind.

Thanks.

FWIW I have a child with heart defects that needed to be surgically
corrected, so I am biased a little in this. My son Thud has had
surgery at 4.5 hours, 6 days, 7 months and 4 years. The easiest one
for me was the 7 months one because not only did he heal fast, he
doesn't remember it and it didn't really change him too much. The
earlier ones were very scary and while the later one was difficult in
a different (more emotional) way, it also has made him into a much
more fearful child than he was before the surgery. Not to mention the
sleep disruption, it is so much harder to get him to sleep now than it
was before.

One other thing that you may want to consider which is not necessarily
going to be part of the information given to you by the specialists is
that certain heart defects and other problems which affect the
circulation can impact on the child's growth. My mother's nursing
text from the 1960's said this so I asked my son's cardiologist and he
basically poo-pooed the idea, but when I saw the cardiac surgeon
before the last surgery he mentioned that doing the surgery at 7
months probably meant that Thud wasn't as growth restricted as he
could have been. I don't know if this is also a problem for children
who have breathing difficulties, but anything that impacts on the
oxygen being carried around the body has got to be more damaging for
the body the longer it goes on for. My thoughts would be to have the
surgery at as young an age as is safe.

Good luck making a decision, it's certainly not an easy situation when
the surgery is not critical.

Cheryl

An update on my post from last week about DS and his surgery --

We went to the Mayo Clinic in Rochester, MN, on Monday and Tuesday.
The good news is that the doctors we were seeing had actual experience
with DS's -exact- problem! We were grateful to be with such
knowledgeable, experienced physicians. The not-so-good news is that
they are recommending surgery. I say "not so good" because I can't
decide whether it's good or not, since we knew we were never going to
hear someone say DS was totally fine.

Anyway, we've been told that if DS gets the surgery, there is about a
90% chance it will fix all his problems. On the flipside, if DS
doesn't get the surgery, there is about a 50% chance he will have few
or even no problems later in childhood and into adulthood. I think
we'll probably go through with it... It is highly unlikely DS would
ever completely outgrow this -- he would probably suffer at least
slight limitation (e.g., will need hospitalizations occasionally from
respiratory illness, would not be able to participate in extremely
strenuous activity) even if he's in the "lucky" 50%. But we're still
thinking about it. They don't want to operate until cold/flu season
is over, so we have a couple months to simmer.

Thanks again for all your words of advice and kind thoughts. I have
to de-lurk more often -- it was nice to be in the group again. :-)

-Carlye
DS 6-2-06
DD 9-29-04

"carlye" wrote in message
oups.com...
An update on my post from last week about DS and his surgery --

We went to the Mayo Clinic in Rochester, MN, on Monday and Tuesday.
The good news is that the doctors we were seeing had actual experience
with DS's -exact- problem! We were grateful to be with such
knowledgeable, experienced physicians. The not-so-good news is that
they are recommending surgery. I say "not so good" because I can't
decide whether it's good or not, since we knew we were never going to
hear someone say DS was totally fine.

Anyway, we've been told that if DS gets the surgery, there is about a
90% chance it will fix all his problems. On the flipside, if DS
doesn't get the surgery, there is about a 50% chance he will have few
or even no problems later in childhood and into adulthood. I think
we'll probably go through with it... It is highly unlikely DS would
ever completely outgrow this -- he would probably suffer at least
slight limitation (e.g., will need hospitalizations occasionally from
respiratory illness, would not be able to participate in extremely
strenuous activity) even if he's in the "lucky" 50%. But we're still
thinking about it. They don't want to operate until cold/flu season
is over, so we have a couple months to simmer.

Thanks again for all your words of advice and kind thoughts. I have
to de-lurk more often -- it was nice to be in the group again. :-)

-Carlye
DS 6-2-06
DD 9-29-04

Hi Carlye

Thanks for posting the update, I was wondering how you were getting on. I
think, given that you saw such a good doctor, that still thinks it is worth
doing, then I think you have to go for it... It's good that they're going to
wait until summer though.

And it's good that you've delurked Nice to see you again!

Lucy xx

On Mar 9, 9:26 pm, "carlye" wrote:
An update on my post from last week about DS and his surgery --

We went to the Mayo Clinic in Rochester, MN, on Monday and Tuesday.
The good news is that the doctors we were seeing had actual experience
with DS's -exact- problem! We were grateful to be with such
knowledgeable, experienced physicians. The not-so-good news is that
they are recommending surgery. I say "not so good" because I can't
decide whether it's good or not, since we knew we were never going to
hear someone say DS was totally fine.

I'm glad you found doctors who have experience with Ds's particular
problem. It is reassuring, isn't it, being in experienced hands?!

I hope you and Dh are able to come to a decision you are both
comfortable with. It's a tough decision, but it's monumental when
it's "your" child. Keeping you both in my thoughts!

Joy