The following are taken from a Hospital News Letter, and concern a sufferer of Melnick-Needles Syndrome, who’s name will remain anonymous, to protect her identity. Despite the severity of her condition, M continues to do well. God Bless Her.
From The Cincinnati Enquirer, August 16 1997:
‘ ‘M’ WALKS AWAY FROM DEATH’
Doctors across Europe give 16-year old M.C. up for dead. The Italian girl suffers from a rare bone disorder that curved her spine nearly 90 degrees. The curvature caved her chest in, reducing her lung capacity to 10 percent - leaving her unable to walk even to the bathroom.
But without surgery, the Naples resider was almost certain to die within a year or two.
A French doctor suggested Dr. Robin Cotton, an ear, nose and throat specialist at Children’s Hospital Medical Center.
Sunday, M goes home with a straighter spine, stronger lungs and parents grateful to five specialists at Children’s. “We’re used to working together,” said Dr. Paul Samuels, M’s anestheologist. “But the unusual thing about this case, was the underlying disease, it’s crippling nature, and the very high level of commitment of everyone, including her family.”
Doctors put M’s chances of dying at 55 percent when she arrived in February. Dr. Raouf Amin used a tracheostomy and exercise to increase her lung capacity by 20 percent. Dr. Samuels devised an anesthesia plan to keep M’s airway open during surgery. On July 17, Dr. Alvin Crawford, director of orthopedic surgery, inserted rods and hooks to straighten M’s spine.
Dr. Richard Brilli, clinical director of pediatric intensive care, oversaw the period after surgery. Her lung capacity increased another 30 percent and she has begun taking a few tentative steps. “When we came here, she had two or three months of life. No doctor in the world would give me any possibility of surgery,” her father said. “These five doctors have truly worked together”.