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On her own: infant benefits from new
surgical approach
by
Heather Woolwine
Public
Relations
On Jan. 25, Nashia Gause began to breathe on her own for the first time
since her birth on Dec. 14. Nashia was born with several syndromes,
among the most debilitating, Pierre Robin sequence.
Dr. Adam Ross,
gives Nashia, 6 weeks old, a finger to suck on post extubation while he
adjusts her devices.
Little Nashia’s mandible, or lower jaw, was so small that it forced her
tongue to the back of her throat, blocking her airway. After her
initial cry at birth, eerie silence followed. Doctors in her hometown
area of Marion performed an intubation so she could breathe. After
trying to extubate (remove the breathing tube) her several times,
Nashia was transferred to MUSC where David White, M.D.,
Otolaryngology-Head and Neck Surgery assistant professor and airway
specialist, weighed options for her care. He consulted colleague Adam
T. Ross, M.D., MUSC Facial Plastic and Reconstructive Surgery director,
to discuss performing a new alternative procedure to the traditional
option of placing a tracheostomy. Ross successfully performed the
technique, dubbed distraction osteogenesis on children in similar
situations during his training.
Never performed on a child of her size before at MUSC, Ross decided to
execute a mandibular distraction to allow the tiny baby to breathe on
her own.
A mandibular distraction involves the surgical cutting of both sides of
the jaw and placement of steel, external devices on the outside of the
jaw. Once the bone is cut, these devices allow for the slow movement of
bone in the desired direction, and the body responds by creating new
bone along the path of movement. “This multidisciplinary
approach to a patient’s problem places MUSC in a minority of hospitals
nationwide using this procedure on children this small, in addition to
its use to avoid a tracheostomy,” Ross said.
After two-and-a-half weeks of slowly turning the devices three times a
day by NNICU (neonatal intensive care unit) nursing staff, Nashia’s
extubation on Jan. 25 demonstrated the first of what will hopefully be
a long line of successful procedures for the delicate little girl.
“Each day for almost three weeks, the nursing staff turned the little
pins in the device moving the jaw one and one half millimeters per
day,” Ross said. “Because we haven’t done anything like this in the
NNICU before, I gave an in-service to the nurses and NNICU physicians
so they would understand exactly how to take care of Nashia during the
distraction. With their help and her successful extubation, we’ve
pulled the jaw out far enough for her to breathe on her own and she’s
even begun to feed on her own as well. She’s doing incredibly well.”
With the device remaining in for at least the next three months,
Nashia’s parents will be responsible for caring for it. “I’m just so
glad that we decided to go this way instead of a trach (tracheostomy),”
said April Gause, Nashia’s mother. “It would’ve been so much harder to
take care of.”
Still the gold standard for many patients with airway problems, a
tracheostomy involves cutting a permanent hole on the outside of the
patient’s throat to allow open access to the airway. “By no means is
this procedure obsolete, but there is a chance for major complications
or even death (1 to 2 percent of patients) from a trach,” Ross said.
“Mucous can become plugged in the hole, or the tube can become
dislodged or pulled out by young children. Socially it comes with more
of a stigma, but ultimately it’s up to the parents and what they
believe will work best for them and their child.”
New to the Otolaryngology department, pediatric airway specialist White
described some additional benefits to Nashia’s treatment. “This process
is basically a few weeks long, whereas a tracheostomy could be in place
for years before requiring a mandibular distraction anyway,” he said.
“It’s an alternative to placing a tracheostomy tube which allows the
child to avoid the complications associated with a trach. Children with
trachs often have delayed speech, difficulty with physical, active
play, and require intensive observation 24-hours-a-day. Suctioning must
be available at all times, along with an experienced caretaker. It’s a
difficult stigma for the children and for their parents, and it can be
much more difficult to integrate a child into a daycare or school. With
a tracheostomy tube, children are often seen as chronically diseased
when they may be otherwise developmentally normal.”
Nashia's parents,
Antwon Samuel and April Gause, comfort her as she awaits extubation.
“I’m just so glad and thankful that they thought about it,” April
said.
“It’s been hard to go through because I’m away from Quantisha (her
2-year-old daughter) and Antwon (Nashia's father). We knew that we were
going to have work with her legs before she was born because of the
ultrasound, but all of the rest of it we didn’t know about. I’m just so
thankful to the Lord for all the help she’s gotten and how nice
everyone here has been.”
Once Nashia finishes with her mandibular distraction, she will then
begin examinations for treatment on her legs. In addition, Ross will
repair her cleft palate around 1 year of age, and her doctors will pay
close attention to her one functioning kidney, her heart defect, and
how her lack of reproductive organs will affect her growth and
development.
During Nashia’s time in the NNICU, April stayed at the Ronald McDonald
House across the street from MUSC. She praised the staff at the house
for helping her with so much and making her feel so cared for and
welcome. Visiting on his days off, Antwon also kept vigil over his
youngest daughter.
Once Nashia can feed well enough, she will be released from the
hospital to begin her life at home with her parents and big sister.
Friday, Feb. 3, 2006
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