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For the last 40 to 50 years,
children with Carter's condition didn't survive.
They were sent home, basically for end of life care.
On our five year wedding anniversary we went to find out
if we were having a baby boy or girl.
We'd actually struggled with fertility issues before that.
And so we were very excited, just thrilled to death.
And when we went to have the ultrasound,
everything was going good.
And once the ultrasound tech got to this abdomen,
they realized that something was not right.
They weren't sure exactly what it was, but
they knew something was not right.
Ended up being the diagnosis of cloacal exstrophy.
Finding out that the baby you felt you was gonna be so
healthy was not going to be born healthy is just heart breaking.
>> Cloacal exstrophy is probably one of the most severe
birth defects still compatible with human life.
It happens around the seventh week of the mothers pregnancy,
when the fetus is the size of an American quarter.
So very early on.
And in this birth defect the abdominal wall does not fuse in
the midline, nor do the pelvic bones fuse in the midline.
So therefore the intestines are on the outside of the body.
The bladder is divided into two halves,
half the bladder on one side,
half the other, with a large piece of intestine between that.
In addition,
70% of them have some degree of a major spinal abnormality.
So it truly is an all-encompassing birth defect.
>> It's almost like a punch to the stomach that knocks
the wind out of you.
It's something that you're gonna recover from,
but at the time it's pretty excruciating.
>> We were not even sure of what Carter's life expectancy was
gonna be, the quality of life he was gonna have.
And so knowing, as a parent, that your child,
that you've wanted and prayed for and wanted so much is going
to be born with this, and not even know if they're going to
be able to survive, and there's nothing you can do about it,
is one of the most helpless feelings you'd ever feel.
After getting the cloacal exstrophy diagnosis,
we waited a week and then met with surgeons at the hospital we
were currently at at the time, and found out that one of
the surgeons had actually trained here at Johns Hopkins,
and had worked along side Dr.
Gerhart in surgery and had experience with this.
And so he immediately sent us here to Johns Hopkins.
>> Here we are waiting to meet this prestigious doctor who
every time we type in anything about cloacal
exstrophy on the internet, his name pops up.
And so I'm sitting alone in the room and in walks the doctor and
he starts asking me if I know this person or
that person, and it comes to find out
our families are from the same small town in Kentucky.
And then, so he's talking to me like my hunting and
fishing buddies, and immediately, it was like,
okay, we're gonna be all right, this is gonna be fine.
It gave us a peace that we, if a doctor had come in and
started using all these big words and terms,
I don't know that we would have felt any better leaving, other
than knowing that they were capable of doing the surgery.
But we knew that after talking with Dr.
Gerhart that not only was Carter going to get treated but
he was going to get cared for.
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>> What they do with this procedure is actually break
their pelvic bone in four places and kind of turn it inwards and
reset it and put him in traction.
That's why they have to be flat on their back's for six weeks,
they have to let their pelvic bone heal.
They also put their bladder back on the inside of their body.
>> It is a team approach, and
as we said it is a multi-disciplinary birth defect.
It requires, often times, pediatric nurse surgeons,
pediatric general surgeons, always requires
a pediatric orthopedic surgeon, a pediatric urologist.
We're very blessed here to have fabulous pediatric anesthesia
that can keep these children asleep for 10 to 12 hours and
wake them up safely, and who can actually relieve their pain
very nicely for the four to six weeks they're in the hospital.
>> With a surgery like my Carter just had,
pain is just a huge issue.
It's one of the most painful
procedures they do even here at Johns Hopkins.
And so, having a pain team that followed him daily, listen to
our concerns, look at him, look at all his vital signs,
talks with his nurses and really manage and stayed on top of
this pain and sedation, just made a huge, huge difference
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>> The nursing care we received was top notch too.
You hear about all these wonderful doctors at Hopkins
but I've gotta give a lot of the credit to the nurses because
that's who's with you 24/7 and they were exceptional.
>> What sets John Hopkins children center apart from
others places is their knowledge of very rare disorders,
very rare birth defects and the research that they can do to get
better at things that no one else can do.
And when you come here you're not that rare case.
You're one of their patients,
one of their children, one of their families.
>> And that makes it a lot easier to come here and
get the care you need because you're not looked at as like,
wow, we've never seen this before.
>> Now Carter is happy, healthy, he's running around playing.
He's a thriving two-year-old, and so the progress that they've
already made is spectacular, so I can only imagine the progress
they're going to continue to make.
>> We take care of these children actually from birth
into adult life,
and some interesting research projects are ongoing.
We just received, in the last year,
permission from the NIH to go forward with learning to grow
bladder sphincter cells In the laboratory from children's own
muscle, not from stem cells, but from children own muscles.
We're just on the cutting edge of new discoveries in this field
and because of the volume of patients we see, recruiting new
patients for the studies is really going to be easy.
Carter actually became the 100th cloacal exstrophy patient ever
treated at Johns Hopkins, and even more uniquely
in the 100th year anniversary of our children's hospital.
So he's unique really for two reasons.
>> We're thrilled.
I mean, we're thrilled that they have hit this number,
not only for Carter, but all of the other children that
are going through this and are gonna go through this.
And just all of the progress they're gonna make for
these children.
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>> He's going to be a normal little boy in most respects.
He's gonna be able to participate in contact sports.
He's gonna be able to continue with his education.
And he's gonna have, other than a few minor little bumps in
the road, his quality of life is gonna be
that as the same as the same of any little boy his age.
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