Infant elective surgery

[Carlye]

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

[Anne Rogers]

Carlye, I've not faced anything similar, but in this situation, I think I'd
definitely go for the operation, you see news reports fairly regularly about
children who are unable to exercise as normal and there are health risks to
that, but also the children are often lonely and have difficulties making
friends and so on. In many ways I would view this surgery as essential,
fitness is generally considered essential for cardio vascular health, and it
sounds like without it, that may be very hard, so I'd consider it essential,
but non urgent, which means you get to choose when he has it. At 9mths, I
think I'd be thinking sooner rather than later, children are much easier to
deal with post operation when they aren't walking!

Anne

[Puester]

carlye wrote:
>
> 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.
>

Not just "be a kid", but have his mobility impaired for the rest of his
life!

We've never been in your position, but my choice would be to have the
surgery. DH's attitude is effectively making the decision that your boy
will never be athletic or even active. Indeed, he may be a prolific
reader who chooses to sit and read and NOT play soccer, baseball,
football, swim, etc. but that choice shouldn't be predetermined for him
by someone else's inaction on his behalf.

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.

DH needs to be in on the decision, but he also needs to be able to make
an INFORMED choice which means being open to all the medical informtaion
available to you.

Good luck, whatever the two of you decide.

gloria p

[Carlye]

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

[Mary W.]

On Feb 28, 10:45 am, "carlye" > wrote:
> 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.

I remember your son's troubles. This is a really tough decision.
I think getting another opinion is a good idea. I would weigh
the specialists opinion probably higher than your pediatrician's.
The thing about waiting is that babies heal faster, he's not
going to remember it, and I'd be worried about waiting that
there is more damage done, or that the liklihood of being
healed 100% is more if you do it as an infant than if you
wait (because babies are still growing and changing so fast).

In terms of waiting until he's 10-12 as you say in your next
post, if he has trouble when he's active, it's going to come
up alot sooner then 10 years. My 5 year old is in soccer,
she's been swimming for a couple of years, she's been
doing gymnastics and music and dance and she loves
riding her bike and her scooter. My two year old runs
around like crazy. So you are probably going to see limits
in his ability and activity much sooner than 10-12 years.

I know you are talking about serious surgery. It's very
scary. I'm peripherally involved with people who work
with kids with cardiac problems. Most of these kids
come through open heart surgery really, really well.
And they heal *so* fast. There was someone who
used to post here who had a baby that had open
heart surgery (ventricular septal defect, I think) and
she did really well. It was a few years ago.

I would recommend, if at all possible, and if you
decide to do the surgery, to try to do it at a good
Children's hospital. They know how to care for kids,
from the surgeons to the pre-op and post-op care,
to the anesthesia.

Best of luck with what you decide!

Mary W.

[Joy]

On Feb 28, 9:45 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.

Hi, Carlye,

I remember your situation.

Wow. That's a tough one. On one hand, it's a frightening prospect
choosing surgery, but on the other hand, I'd want my child to run and
play if he could be able.

I haven't faced a similar quandary (yet), but Grant just had four
surgeries in the last month and half (on his brain!), and it's not
much easier knowing that it is necessary it has to be done.

We don't live far from Mayo. Are you having to travel far? I hope
the appointment gives you more answers and helps you make the
decision. It is definitely a tough one. You're in my thoughts! And
please keep us posted.

Joy

Rose (1-99)
Iris (2-01)
Spencer (3-03)
Grant (9-05) http://www.caringbridge.org/visit/grantphilip

[Joy]

>
> I would recommend, if at all possible, and if you
> decide to do the surgery, to try to do it at a good
> Children's hospital. They know how to care for kids,
> from the surgeons to the pre-op and post-op care,
> to the anesthesia.
>
> Best of luck with what you decide!
>
> Mary W.

I was going to suggest this as well, Carlye. Children's of
Minneapolis is excellent. We've been there a lot recently, so I'm
probably a bit biased. LOL

Joy

Rose (1-99)
Iris (2-01)
Spencer (3-03)
Grant (9-05) http://www.caringbridge.org/visit/grantphilip

[Anne Rogers]

> 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.

but the benefits of heart surgery are often much greater than the benefits
of surgery elsewhere, without substantially increasing the risk.

It's possible that if you quantified the risks, putting him under a GA when
he was younger to diagnose this condition would actually be greater than the
risk over the next few months of GA and surgery combined, the risks of GA
are higher in small babies, you may want to discuss with an anaethetist at
what point these start to decrease, I have a suspicon due to when many non
urgent baby surgeries, such as correcting more minor heart defects, cleft
palates and so on, that it is around 6mths that it gets better. To help your
DH, you may also want to look how these change over the rest of life, I
suspect there is less difference between now and 10 or 12, then there would
be between birth and now, so there may be minimal change in risk in waiting,
could even be higher as there might be other complications that have higher
potential to occur. Plus, 10 or 12 is late enough to have established
patterns of inactivity and social interactions, my honest opinion is that
this needs to occur before preschool or kindergarten and that that probably
means sooner rather than later. Having been through medical tests with my
older child, they are significantly easier before about 15 mths, then after
about 3 and a bit, before then, they are aware, but you can hold them still
and so on, beyond then you need cooperation, but they can't understand
enough to give that for another couple of years.

Anne

[Carlye]

On Feb 28, 1:14 pm, "Joy" > wrote:

> I haven't faced a similar quandary (yet), but Grant just had four
> surgeries in the last month and half (on his brain!), and it's not
> much easier knowing that it is necessary it has to be done.
>
Wow, Joy. Four brain surgeries in a month and a half? I am so
sorry. How is Grant doing, in general? I used to be better about
keeping up with him on caringbridge. To tell you the truth, it's been
a while since I visited his page. But I don't know how you do it --
then again, if anyone had told me a year ago when I was pregnant that
we'd be dealing with this, I probably wouldn't think I was capable of
handling it. I know we're stronger when we need to be, but that
doesn't mean it's not really, really hard and scary.

> We don't live far from Mayo. Are you having to travel far? I hope
> the appointment gives you more answers and helps you make the
> decision.

We're about 320 miles from Mayo, so it's not too bad to drive. Better
than a flight. Initially we were being referred to the children's
hospital in Houston, and I was not a fan of taking DS on an airplane.
We have practically kept the kid in a bubble to keep him from getting
sick and having his already narrow trachea get inflamed. An airplane
would -not- have been good.

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

[Joy]

On Feb 28, 2:42 pm, "carlye" > wrote:
> On Feb 28, 1:14 pm, "Joy" > wrote:

> Wow, Joy. Four brain surgeries in a month and a half? I am so
> sorry. How is Grant doing, in general? I used to be better about
> keeping up with him on caringbridge. To tell you the truth, it's been
> a while since I visited his page. But I don't know how you do it --
> then again, if anyone had told me a year ago when I was pregnant that
> we'd be dealing with this, I probably wouldn't think I was capable of
> handling it. I know we're stronger when we need to be, but that
> doesn't mean it's not really, really hard and scary.

Hi, Carlye,
It was a bit crazy!! The first one I was so frustrated because I felt
I wasn't being listened to regarding my concerns (I was dealing with a
different person than usual). I've never wanted to be proved wrong so
badly, but I was right, and it was a relief to "fix" it. All the
other stuff has really tested my faith and patience. It's hard to
make ER runs in the middle of the night and think your baby is going
to die or suffer permanent brain damage.

BUT, in general, he's doing great. There's a part of me that's still
hyperdiligent and overanxious, but I think that'll resolve once we've
been home for awhile. I hope so. LOL It is definitely something you
just deal with. It's our life, we either handle it or we don't, and
we've chosen to deal. For the most part, anyway. :)

Grant's a little charmer, and he's such a sweetie. He's gotten a bit
of an attitude recently, and it's fun watching the personality
emerge. I've said for a long time I'm worried about the terrible twos
or threes because he's been such a GOOD baby. He's crawling on hands
and knees and has a desire to pull to standing. We've had a bit of a
setback with the surgeries, and I do think it'll take him a little
while to get back on track, but we're going in the right direction
now. He can really move aross a floor and gets right in with the
siblings.

What you're dealing with is big stuff, too. Neil and I've spent more
than enough time on the 6th floor of Children's, and we've had the
same thought of "Wow, how do they do it?!" I think when you're in a
situation it's easier (though tough and scary for sure) on the inside
than it is looking in.

> We're about 320 miles from Mayo, so it's not too bad to drive. Better
> than a flight. Initially we were being referred to the children's
> hospital in Houston, and I was not a fan of taking DS on an airplane.
> We have practically kept the kid in a bubble to keep him from getting
> sick and having his already narrow trachea get inflamed. An airplane
> would -not- have been good.

Yikes! No airplane travel then. I hope the drive to Mayo is a safe
one. We travel about 300 miles for treatment for Grant's feet
(nonsurgical clubfoot method), and it's a do-able drive. Long but do-
able!

Best wishes, Carlye for you and DS.

Joy

[Jamie Clark]

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

Check out the family! -- www.MyFamily.com, User ID: Clarkguest1, Password:
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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
>

[Jamie Clark]

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

Check out the family! -- www.MyFamily.com, User ID: Clarkguest1, Password:
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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
>

[lucy-lu]

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

[laurie]

"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
>

[Joy]

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

[Carlye]

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

[Cheryl]

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

[Carlye]

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

[lucy-lu]

"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

[Joy]

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