Infant elective surgery

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

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

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

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

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.

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

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

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

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

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