Help with baby Noah Fusco's 4-month NICU stay

{Please note – any additional funds beyond the "goal" will go toward Noah's long-term care.}

On November 20, 2022, Brianna and John Fusco gave birth to their beautiful baby boy, Noah at Boca Regional Hospital. What should've been a joyful and sleepy two days in the hospital was instead months of 12-hour long days sitting by his incubator in the NICU. Brianna, a nurse and John, a wedding photographer have undergone tremendous emotional stress and will be facing unbelievable financial challenges once their sweet boy is finally home.

When Noah was born, he stopped breathing and was immediately brought to NICU, where he needed to be intubated for respiratory support. The following day he had two episodes of what the doctors thought may have been seizures.

Following the seizure-like episodes, Noah was transported to the NICU at Joe DiMaggio. Noah had an EEG and MRI, which confirmed there were no seizures but provided evidence of mild hypoxia (lack of oxygen to the brain) as well as mild hydrocephalus (fluid in the brain).

On 12/8/22 Noah underwent surgery due to findings of Hirschsprung’s disease. Hirschsprung’s Disease is when the neurons in your bowel do not work, so he could not poop on his own until he had surgery to remove the nonworking part of his intestine.

Noah was intubated for almost a month of his life, until 12/13, when he was extubated and put on a CPAP machine.

On Christmas Eve morning we received news that Noah has Congenital Central Hypoventilation Syndrome, CCHS for short. CCHS is a rare neurological disorder characterized by inadequate breathing during sleep and in more severely affected individuals, during waking periods as well. This is a condition that he will battle for the rest of his life.

On 12/30 Noah underwent a tracheotomy in order to provide the mechanical ventilation that he will need. Following the surgery, he was put in a coma-like state for the weeklong recovery.

Noah is currently fighting a bad infection and had his 3rd blood transfusion on 1/15.

Noah will continue to be in the NICU for another 1-2 months but his journey with CCHS is lifelong and he will continue to need special care and therapy to assist in his development as he grows older. He will require 24-hour home nursing care once he is home as well.