Colorado Fetal Care Center 2017 Overview and Outcomes CIMFH_160133591_2017-07_CFCC 2017 Overview and Out | Page 20

PATIENT EXPERIENCE
A Mom Recounts Coming to
Terms with her Daughter’s
Myelomeningocele
The 20-week ultrasound started out
uneventful. We were having a girl. She had
10 fingers and 10 toes. We decided to name
her Emma. (MMC), could mean an inability to walk and
long-term disability. But it couldn’t possibly
be that. Our little girl was going to grow up
taking dance classes and playing sports.
After about 15 minutes, the ultrasound
technician scanned our daughter’s back
and that’s when we saw it: a big bubble
poking out of her lower back. The room went
silent. My husband and I had taken many
pathophysiology classes as undergraduates,
so we both recognized what the lesion meant.
Still, neither of us dared say anything, as if
speaking our fears would make them real. We
watched in silence as the technician scanned
up and down her spine. But there was no denying what we saw. I kept
thinking, ‘She was moving her legs in the
ultrasound; once she is born nobody will even
know she has a birth defect.’ But our fears
were confirmed.
Finally, I had to say something. “Um, does our
daughter have spina bifida?” I held my breath.
The technician looked up at me and by her
expression I knew. She said something like,
“I can’t diagnose, but it looks like there is an
opening in her spine — I’ll have to have the
radiologist look.” Then she left the room. I sat
there in shock.
I knew that spina bifida was a developmental
defect in which vertebrae over the spinal
cord fail to close and a portion of the spinal
cord emerges through the opening. The
most common form, myelomeningocele
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Emma’s lesion level was from L1 to
S2, she had a Chiari II malformation (a
structural defect in the cerebellum) and
dilated ventricles (signaling a related
brain condition). We met with a surgeon in
Utah, where we live, to review traditional
treatment options, as well as the newer in-
utero surgery. We discussed the pros and the
cons and decided surgical correction was an
option we’d like to explore. He referred us to a
treatment facility that performed the surgery
and we left his office.
While I was waiting for this facility to
contact us, I found a Facebook group for
moms who underwent fetal surgery for
myelomeningocele repair. I asked some
questions and got a message from a mom
who had just had the surgery two months
prior and was on bed rest in Colorado. She
“The surgery was a success: Our surgeons returned Emma’s
spinal cord to the spinal column and closed the lesion.”
told me about the Colorado Fetal Care Center
at Children’s Hospital Colorado and what an
amazing team they had. I decided we needed
to contact them.
From the second I talked to the CFCC’s care
coordinator on the phone, I felt better. She
scheduled everything so we could come
to Colorado within the week. She even
contacted our insurance company to make
sure we would be covered. For the first time
since we had gotten Emma’s diagnosis I felt
relief. Meeting with Timothy Crombleholme,
MD, our fetal surgeon, I felt hope.
The surgery was a success: Our surgeons
returned Emma’s spinal cord to the spinal
column and closed the lesion. At 31 weeks
and 2 days, our Emma was born, weighing 3
lbs., 1 ounce, and measuring 16 inches. She
was premature but completely healthy.
Because of the fetal surgery, Emma has not
needed a shunt — a common treatment for
MMC — and no additional brain conditions
have emerged. Even her Chiari malformation
has reversed with no complications. Although
she does not have much movement in her
legs, she may at one point be able to walk
with assistance.
She’s grown into a happy, talkative, spunky
girl who is learning to get around the house
in her own way and getting into all kinds of
mischief. She is our greatest joy and a true
miracle. We know there’s a lot of joy and
happiness ahead.
Colorado Fetal Care Center 2017
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