Going the Distance for Life-changing Care: Lincoln's Story
Thursday, July 23, 2020
Little Lincoln Johnston’s path to Omaha might have been long, but his road to recovery looks to be on track thanks to the doctors and staff at Boys Town National Research Hospital.
Kylee Johnston and her husband started to notice ridges on Lincoln’s head at 1 year old. Lincoln’s pediatrician assured his parents the ridges were normal, and kids can grow out of it. However, when they returned for Lincoln’s 18-month check-up, the pediatrician said it was time to look to a specialist.
Lincoln was diagnosed with sagittal craniosynostosis. This condition causes pressure on the brain and prevents it from growing. Surgery can reduce the pressure and allow for proper brain development.
With the Johnston family being from Collinsville, Oklahoma, they had never heard of Boys Town Hospital, but that all changed.
Kylee turned to her craniosynostosis group on Facebook for recommendations and heard great feedback about Dr. Jason Miller, craniofacial surgeon, and Dr. Linden Fornoff, pediatric neurosurgeon, at Boys Town Hospital, and the family decided to make the drive to Omaha.
In November of 2019, the Johnstons came to Omaha and decided surgery was Lincoln’s best option. Dr. Miller and Dr. Fornoff removed a small strip of Lincoln’s skull allowing Lincoln’s brain to expand and grow normally.
The Johnstons said they couldn’t have been more pleased with their experience at Boys Town Hospital.
“The whole hospital experience was great,” Kylee said. “Lincoln had been hospitalized before, but we have never seen the doctors as much as we did here. I felt he was a priority. From the first appointment, to the diagnosis, to the surgery, the care here was just phenomenal, and I haven’t seen that care at another hospital.”
Approved by the American Cleft Palate-Craniofacial Association, the comprehensive team of physicians, surgeons, clinicians, nurses and support staff help make Boys Town Hospital a truly unique place to care for children with craniofacial conditions.
For Lincoln and the Johnston family, the journey to Omaha was a life-changer.
-
Lincoln's Story: Craniofacial Clinic - Boys Town National Research Hospital
We started noticing an issue probably
around a year old, like ridges on his
skull. We brought it up to his
pediatrician and she said, oh it's pretty
normal you know, kids can grow out of it.
We'll just keep an eye on it. We went in
for his 18-month checkup and she started
feeling and she was like, well I think
it's time that we go get you checked out.
There's multiple sutures in his skull so
he had what was called a sagittal suture
close to early. So what happens when
they close too early, is it
prevents his brain from being able to
grow correctly with this skull. It can
cause pressure on his brain which can
lead to many other issues down the road
if not fixed.
I went on Facebook and kind of did a
research in a group that I'm in for
craniosynostosis and I got a lot of
good feedback about Dr. Miller and Dr.
Fornoff. So we decided to come up here.
In early November we were able to get
squeezed in to come see the doctors and
from there we decided that surgery was his best option.
Let's not get too close. He's just a
normal toddler now. If
you didn't know something he had
something done to him, you would never be
able to tell. From the
day he was able to open his eyes in the
hospital, he was able to get up and he
was running around, walking around like
nothing had ever happened. The whole
hospital experience was great. He's
been hospitalized before but we've never
seen the doctors as much as we did here.
They would check on us multiple times a
day which was really nice because I felt
like you know, he's actually a priority
and not just another patient on a list.
Dr. Miller, he was super nice. He
explained a lot to us about what he was
doing. He just makes you feel at ease
like if it was his
own child pretty much. Dr. Fornoff was very personable. She just acted
like we were a family. She made it easy to
understand exactly too - she helped go over
the processes. It's a pretty invasive
surgery so I was really nervous but
seeing the differences already, just a
month out, it's amazing. It really made
me know for sure like I did the right,
you know, my my husband and I made the right
decision. Oh no let's not throw the rock
in the water. That's not nice.
From the start, from like your first
appointment, to the diagnosis - when you
actually have the surgery, the care
here was just phenomenal and I have not
seen that care at another hospital. They've just done everything
possible to make it an easy experience
for us.
