Patient 1
Patient 1 was discharged from NICU at 12 weeks of age with a G-tube and
tracheostomy. Dioxide was discontinued prior to discharge with no
further episodes of hypoglycemia. The family moved back to his country
of origin but return periodically to continue care with various
specialties at Nicklaus Children’s.
Patient 1 is currently 4 years old, has global developmental delay,
short stature, is non-ambulatory and continues to be G-tube and
tracheostomy dependent. He is currently undergoing endocrine evaluation
for concerns of micropenis and persistent cryptorchidism (pending
surgery). However, care has been complicated and delayed because of
barriers to accessing care.
The patient underwent bilateral Ponseti casting for his bilateral
clubfeet with residual equinus and cavus for which he later required
bilateral open Achilles lengthenings (2019). However, he was noted to
have mild recurrence of bilateral cavus and equinus deformities during
his last orthopedic evaluation, for which he is uses full time orthoses.
Furthermore, he has reduced range of motion of knees and hips secondary
to arthrogryposis and is unable to stand.