Marissa was born prematurely after 25wks gestation. Due to her prematurity, Marissa suffered grade III and IV intra-ventricular hemorrhages, the underlying cause for her hydrocephalus. She was shunted during her NICU stay. We adopted Marissa when she was 4 months of age, bringing her home on her due date.

Marissa was, surprisingly, developmentally on target and a great eater up until 7 months of age. During what should have been a routine shunt revision (VP to a VA), a careless intra-operative error resulted in a catastrophic brain hemorrhage. Marissa spent months in the PICU following that surgery. Due to the hemorrhage, she went on to develop significant scarring within her brain and her hydrocephalus became extraordinarily complex and seemingly impossible to manage. Over the next 6 years, Marissa would undergo approximately fifty shunt revisions. She was hospitalized often, many times for months on end.

Marissa also developed intractable epilepsy and triplegic cerebral palsy after the second brain hemorrhage. At the age of 3y, Marissa had a significant complication following a VGB shunt placement which resulted in sepsis and a brain abscess. She lost her vision and her ability to eat orally at that time. Marissa has endured complication after complication all related to the complex course of treatment for her hydrocephalus.

In 2015, the excruciating decision was made to enroll Marissa in palliative care knowing that we would likely be transitioning to hospice. In 2016, with her medical team at a loss for what to do next, we made the decision to uproot our family and move across the country for a fresh start and fresh set of eyes. We quickly developed a stellar team of doctors and therapists. We weaned Marissa off the dozens of daily medications she had been prescribed to control her symptoms and incidentally control the side effects of the medications prescribed. We turned to a more integrated approach and Marissa began to heal.

As of today, at age 14, Marissa has undergone one hundred surgeries exactly, of which, sixty-five were shunt revisions. Marissa is a feisty, spirited warrior who brings joy to every single person she meets. She has had one significant shunt-related episode, resulting in several back-to-back revisions, since 2016. Currently, Marissa sports 3 shunts – 2 V-pleural and 1 Cervical-subarachnoid, a central venous port and a G-tube. She is extraordinarily healthy, and she is absolutely thriving!

Marissa loves school, music, swimming, and books. She has a wicked sense of humor and keeps us, her teachers, therapists, and doctors on our toes. Marissa continues to work hard to overcome all she has endured in her short life. She adapts in miraculous ways. While she is nonverbal, she makes her likes/dislikes, wants/needs, and desires abundantly clear to those around her. She is truly the light of our lives. We will be forever grateful to our team for their tireless efforts to ensure the best quality of life for our brave, sweet girl.