We went in for our routine 18 week ultrasound. The ultrasound technician actually left
the room and came back in with a doctor and they then told us that she had
a unilateral cleft lip.
About one in about 750 infants worldwide are born with cleft lip or cleft palate or both.
Elizabeth's cleft was diagnosed in utero. That's frequently what happens now.
Something happens during the first trimester to prevent these pieces of the
face or pieces of the mouth from coming together and fusing completely and the
opening that's left behind is called a cleft. Now, most clefts are probably not genetic.
We don't know exactly why it happens. It may be a combination of some
environmental factor or some genetic factor.
For us it was very shocking and I'd say kind of an unknown panic.
We didn't know the severity of it. We didn't know if the palate was involved.
So we had all these unknowns. We were just at that point trying to
really focus on trying to provide the best health and to find the best solution we could.
It can be kind of a scary diagnosis and not many people know what it is,
they don't know what is in the future and for the child and if you come in and you see
a good cleft team. they can really tell you what it means,
how it happened, and what you need to do to repair it.
The team at Johns Hopkins Cleft and Cranial Facial Center includes
a geneticist, a pediatric ear, nose, and throat specialist, a hearing specialist,
an orthodontist, a speech pathologist, a nurse coordinator, a dentist, a feeding
specialist, and a plastic surgeon.
Each year the team treats nearly 650 children.
The goal at Johns Hopkins is to help each child reach their full potential and to
experience their life to the fullest.
We went in and met with Doctor Redett and his team and I think I remember the first
thing he did was say congratulations on your pregnancy, which made us feel normal.
It wasn't an issue. The cleft was so secondary.
He put this positive spin on, you know, a negative thing at the time which kind of
transformed the way that we looked at things.
He sat down and pulled out a piece of paper and actually started drawing what
was gonna happen, what the chances were of what she would have, and it seemed like
such a normal thing to happen to a baby. Doctor Redett stressed that it was
a curable problem. It was a fixable problem.
Due to the nature of Elizabeth's condition, she only required one surgery
at this time. When we do cleft lip surgery, the goal
is to give that child as normal appearance as possible and to allow them to have as
normal dental development as possible, so if you can go in to surgery with those
goals and you do everything you can to achieve those goals, you're gonna have
a good result. For families who have a child born with
a cleft lip or palate, there's an increased risk of having another child with an oral cleft.
That was the case when their child Rider was born.
We're shocked by the news again because we had gone into this pregnancy thinking
there wouldn't be anything. Most people have a very low risk of having
a child with a cleft lip or palate depending on what your ethnicity is,
but your risk of having another is a little higher. It's not much higher, but it's a little
higher than the rest of the population.
A consult with Doctor Redett revealed that Rider would have surgery at ten months
with similarly positive results. He's basically a normal baby at this point.
He will have surgery down the road, but based on our experience with Hopkins,
for us it was a simple decision. This family really exemplifies what we
like to see. They're super positive.
You know that those kids are gonna do really well as they get older even with
a cleft lip and a cleft palate. I think the family has a lot to do with
how well these kids do as they grow up.