Baby Marc Emfirmo was born full term via Cesarean Section since the doctors already knew that he had congenital hydrocephalus. But despite the insertion of a shunt to relieve his brain from the build-up of fluids, he was not recovering as well as expected. He cried a lot, had some trouble feeding, and his tiny body seemed to lose muscle tone so he had poor head control, became floppy, and struggled to breath.
The various tests conducted confirmed what Marc’s doctors had been suspecting: he had Arnold Chiari malformation. In the back underside of Marc’s brain, tissue from the pair of clam-shell-shaped structures called the cerebellar tonsils were squeezing against the edge of his skull’s opening and down into the spinal canal.
In September 2018, Marc underwent a lateral sphenoid meningocele repair but his recovery was a stormy one. His condition required the expertise of several specialties including pediatric neurology, neurosurgery, infectious diseases and general pediatrics. Despite the complexity of her son’s illness, Mrs. Emfirmo remained hopeful and the logistics of the treatment plan went smoothly.
With the help of Let’s Save the Brain Foundation, Marc received a Becker External Drainage and Monitoring System (EDMS) to address the hydrocephalus. The procedure was successful and Marc was discharged stable.
Currently, at 4 months of age, Baby Marc has been given another chance at life so that one day he can grow stronger … take his first steps … and say his first words. He has conquered Chiari and continues to fight the good fight.
