Austin was Amber and Alex’s second child. His mom had an uneasy feeling throughout her pregnancy that something was wrong. As she was preparing for delivery it was discovered that Austin was in fetal distress and an emergency C-section was performed. At birth Austin required aggressive resuscitation and was immediately admitted to the Neonatal Intensive Care Unit. At 36 hours old he began to have seizures and a CT scan indicated severe brain damage. Because of these complications he was transferred to the NICU at Nationwide Children’s Hospital where he spent 58 days. Since then, Austin has experienced many complications. He had feeding difficulties, so at one month old he had surgery to place a tube in his stomach to feed him. At 2 years old he received a trach and now uses a ventilator. He has been diagnosed with brain damage due to lack of oxygen, cerebral palsy, and a severe seizure disorder.
Because of all his medical complications, a Palliative Care consult was suggested to Amber and Alex when Austin was about 8 months old. At first Amber thought, “No way!” because she mistakenly thought that Palliative Care meant “that Austin was going to die.” Austin’s parents were encouraged to try Palliative Care and now Amber is an ardent supporter. “The best part of palliative care is the support that we have received from the team, both emotional support and help with making difficult medical decisions for Austin. I couldn’t talk to my friends about my fear of losing my baby, or about wondering how far is too far to go with treatment. But I could talk to the Palliative Care team. They are always available and they understand. If they notice we are having a bad time, they will call just to check in.”
Austin is a very sick little boy, but don’t be fooled. He does enjoy life. Palliative Care works to keep him comfortable and his family is dedicated to helping him live life fully. Austin goes to the zoo, the water park, and out to Chuck E. Cheese’s to celebrate his big brother’s birthday. One of his favorite activities is riding the carousel. Austin’s family is dedicated to “giving him the best life he can have for the time that he has with us” and Palliative Care is committed to helping Austin’s family make this goal a reality.