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!