SHORT ANSWER
A Focused Approach
NEUROLOGY
Charcot-Marie-Tooth disease ( CMT ) is a degenerative neuromuscular disorder that damages the nerves in the arms and legs . Unlike their counterparts with more debilitating neuromuscular disorders , some kids with CMT remain high functioning and active . Historically , though , all neuromuscular conditions regardless of severity have been treated in the same clinic setting . In early 2020 , Children ’ s Hospital Colorado created a multidisciplinary clinic specifically for CMT patients .
“ This clinic is pretty unique in this space ,” says Susan Apkon , MD , Vice-Chair of the Department of Physical Medicine and Rehabilitation . “ We ’ re among only a couple in the country . It was a commitment on the hospital ’ s part to make it happen , but the level of care we ’ re now able to provide is quite remarkable .”
“ One of the biggest benefits is that we schedule all of a patient ’ s appointments on the same day ,” adds pediatric neurologist Michele Yang , MD . “ Even though it sometimes makes for a long day , families greatly appreciate the coordinated care .”
Case Study : Upside-Down Ablation
How do you perform a minimally invasive fetoscopic laser ablation for TTTS when the placenta covers the entire anterior uterine wall ?
The presentation was textbook twin-twin transfusion syndrome : one recipient twin floating in a glut of amniotic fluid , the other “ stuck ” in its amniotic sac with essentially none , indicative of the discrepancies of placental blood flow — potentially fatal for both twins — that characterize the condition .
In addition to Drs . Apkon and Yang , clinicians include a physical therapist , an occupational therapist , an orthopedic surgeon and a genetic counselor . The team also works closely with an orthotist who runs a parallel clinic . A multidisciplinary approach allows the team to deliver nuanced care to each patient , identifying specific nerve problems and tracking them , intervening at the most appropriate time . This approach also helps families better understand the progression — or lack thereof — of their child ’ s condition so they can make more informed decisions about their child ’ s care and receive care that is more comprehensive . •
SUSAN APKON , MD
Chief / department chair , Department of Physical Medicine and Rehabilitation , Children ' s Hospital Colorado
Professor and vice chair , Department of Physical Medicine and Rehabilitation , University of Colorado School of Medicine
MICHELE YANG , MD
Associate professor , Pediatrics-Neurology , University of Colorado School of Medicine
The best solution is typically fetoscopic laser ablation , in which a surgeon makes a 3-millimeter incision and , with a fetoscope inserted into the uterus and through the amniotic sac , uses a laser to cauterize and seal off vascular connections in the placenta .
“ The ideal situation would be to visualize the placenta with the fetoscope at a 90-degree angle ,” says maternalfetal medicine specialist Nick Behrendt , MD , one of four fetal surgeons at the Colorado Fetal Care Center at Children ’ s Hospital Colorado . “ You basically want to be perpendicular to the placenta .”
That ’ s pretty manageable for placentas that implant on the posterior wall of the uterus . The surgeon just goes in through the anterior wall . It ’ s a bit tougher with an anterior placenta , but the surgeon can usually manage with some creative positioning on the mother ’ s part .
When the placenta covers the entire anterior uterine wall and then some , though , that ’ s a challenge .
“ This case is really unique ,” says Dr . Behrendt . “ We just couldn ’ t find a safe entry spot using what I would say are our traditional methods . This is one of the only times we ’ ve seen that .
“ We had to put our heads together ,” he adds .
6 | CHILDREN ’ S HOSPITAL COLORADO