Bennett was born, uh August 28th, 2013, everything seemed really normal.
At his two month checkup, the pediatrician found a heart murmur, and, she told us it
wasn’t a big deal, maybe get it check out , she recommended Nationwide Children’s
Hospital. Little did we know that pretty much our whole
world changed when we got up here. Bennett has dexracardia, meaning his heart
points towards the right side of his body instead of the left side. his receiving chambers
from the body and from the lungs connect to the opposite pumping chambers that they should,
and those pumping chambers connect to the opposite arteries that they should.
Some patients in the long term period the right ventricle would be fading… and cause
heart failure. So it’s the biggest concern in this disease.
I was just heartbroken and devastated and I cried. We got him help just in time basically.
We came here and he had a PA band put on, and that was to get him ready for his big
surgery that we’ll be doing. What they did with his initial surgery is
they put a band of artificial tissue around the pulmonary artery. By doing that surgery
and limiting that blood flow that can go to the lungs, we kind of put him more in a balanced
state, and so he can use his calories for what all babies should, growing, developing,
playing , all those things. Nat pop: Music/pics
We’re here today, just for a checkup actually and uh, that he’ll be able to do the double
switch..
A double switch combines two surgeries. So, right now his blue blood from his body comes
back to the right atrium and goes to the left ventricle and then goes out the pulmonary
artery. And the red blood from the lungs comes back to the left atrium and goes to the right
ventricle and then goes out the aorta. First we need to close the hole between the pumping
chambers. Then, we’ll take the blue venous blood from the body and the red venous blood
from the lungs and route them to opposite pumping chambers. That only fixes half the
problem though. We have to take the major arteries that come off the heart and we have
to switch those two. That’s why we call it a double switch.
After the double switch operation, his circulation will be close to normal heart circulation,
so his life could be, his quality of life could be much much better
Essentially a heart transplant is what they are doing with his heart, just going to use
his own heart, fix it, and hook it up the right way.
Certainly we know that doing a double switch in really young babies is difficult, … right
now he’s a good candidate because he’s growing well, he’s getting bigger, there’s
more space in the chest when that happens
Probably less than 20 double switches are done in children’s hospitals in the US per
year. But Dr. Shinoka has a lot of experience doing double switches
I asked him, I said “If it were your kid, what would you do?” and he recommended the
double switch because it is possible for him to live a fairly normal life. So if that’s
what the surgeon is going to do, would’ve done, that’s what we’re going to do.
Three months later, day of surgery We’re here today at Nationwide Children’s
Hospital for Bennett’s double switch operation The double switch is going to get him fixed
so he can be a normal kid This is going to be the longest day of our
lives… uh, 6 to 10 hour surgery I don’t want you to go through it either
We’re really excited and really happy for it, but we’re not looking forward to it.
We’re getting close Bennett
I’m just going to verify this is the consent with the NP? Yeah.
Do you guys have any questions/concerns? I think we’re good… everyone has covered
it… everyone’s really been great
Ready to rock and roll?! Good morning… hi.. hi how are you. He’s
not too bad of a mood this morning? VSD closure arterial switch… so it’s going
to be a long day
Nats walking back to OR Ok buddy… (kisses) stay strong.. be tough
(mom sobbing) Hi buddy… say we’ll take good care of
you.. (mom sobbing) bye sweety…
That’s his favorite stuff… is this woody?? (kisses)
Bye sweety (kisses from mom) Bye Bennett (Bennett going into OR)
7:30 a.m. Surgery begins
Alright this is Bennett Beaver doing a senning double switch and VSD he weighs 9.5 kilos
Dr. Shinoka getting suited up
They tell us that he’s doing great and everything’s going as it should just a little slower.
Four hours into surgery I’m looking forward to just seeing him again
I cannot wait… I’m probably going to cry tears of joy
I kind of want to see Dr. Shinoka just as bad as him… cause when I see Dr. Shinoka
everything’s over with.
2:30 p.m. Seven hours into surgery Hello just wanted to give you another update.
Things are going well and he’s still stable and doing well vital signs are great Dr. Shinoka
is finishing up with the baffling and we’re going to start the switch here in a little
while. Ok, Ok? So we’re probably about half way through.
Ten hours into surgery We just had our latest update… Kat just
called… He’s still hooked up to the machine, but
the machine isn’t doing the work, his heart is actually doing the work.
I didn’t think I’d be this happy, like it’s not over yet… I can’t believe it’s
gone this well. You just expect the worst.
You’ve been so great to us
waiting on Dr. Shinoka to come out and we’ve already be told good news just waiting on
the official word… just waiting patiently…
6:30 p.m. Surgery ends it took long long time to dissect whole heart…
just keep the chest open tonight.. closure tomorrow…
Everything’s good? Great. No thank you. Can I give you a hug doc? Thank you for taking
care of him (grandma) can I hug him too?? (laughing)
It was long, long operation but all was successfully done and the patient is doing well
Ok, come on back… Hey big guy… hey…
Is his heart rhythm pretty good? Yeah.. he’s been normal since he’s been back here
Poor little guy He looks better than he did when he had the
PA band surgery and this is a much bigger surgery he’s a big healthy boy…
Everything is so good at this moment Tonight is the most important night after
the big surgery… yeah My house is just 10 min. from here… so I
can… (running)… oh really? That’s great to hear
It’s warm… touch it… yeah.. that’s a very good sign
thank you very much again… see you tomorrow. Bye… You really are my favorite person by
the way… The next morning
He breathed most of the night on his own. He does have the breathing tube still in,
which will help him, assist him if he needs it.
Sometimes I think he can hear us, he can understand. Because sometimes we can talk to him, and
he’ll calm down. Right now, Dr. Shinkoa is back there closing
his chest. Um, he was unable to do it yesterday after
the surgery just for the simple fact that it was an 11 hour surgery, and uh, he did
take him quite a bit of swelling Dr. Shinoka, he just, he give us our second
chance, I guess.
He’s just a very normal person, but then again, he just for 11 hours had his hands
inside our son’s chest and fixed him, so [Woman: Yeah] what can you say about somebody
like that? The function is excellent, and, uh, rhythm
is ok, no arthymers, so far we have no complications. So I’m very satisfied.
And the final goal is to start eating and walking. So hopefully it happens within five
or six days.
I’m so confident with this double switch operation.
Three days after surgery, home video
Today’s the start of the 8th day. Pretty amazing that we’re getting out of here so early when
we were told 3 weeks to a month. We’re free.. we can go home and enjoy the
rest of our lives. He’s been normal Bennett for about 3 days
now… He’s been a big sticker for the past week
(laughing) Nats of Bennett
Yeah, like we get a cold and we’re miserable for a month, and he has open heart surgery
and within four days he’s doing great. [baby and Dad making noise][laughter]
Bennett recovered amazingly well. Um, this is always, it’s done so rarely it’s always
a little bit of an unknown. I think he shocked all of us when he came
out and, um, really within 24, 48 hours was steps ahead of where we thought he would be.
He’s got the pump to his body that he should have. He’s got the pump to his lungs that
he should have I think that he’s in a far better situation
by taking the risk, and doing what we did.
So here’s your list of medications going home..
We’ll see him in a couple weeks and make sure things are still going well, and hopefully
wean some medicines at that point, I’ll just have you sign the bottom of this
one saying you guys are taking him home. (clapping) For all he went through to still be all smiles..
and to still, you know wanna play, and interact, you know, it’s amazing.
You guys are good to go home!