Freddie was born at 29 weeks gestation and developed NEC at two weeks old. After a long hospitalization, Freddie made it home to his loving family. That is when Freddie’s journey with the long-term outcomes of NEC began.
Today, Freddie has extreme short bowel syndrome, is reliant on parenteral nutrition, and has been diagnosed with cerebral palsy, global developmental delay, autism, language processing disorder, sensory processing difficulties, and visual impairment. Freddie, who is now nine years old, will live with the devastating consequences of this disease forever.
“Everything we do in the NICU affects our babies’ brains. As we strive to save infants from NEC, we must also protect their brains.”
Marie, Freddie's mom
What Helped
- Staying at Freddie’s bedside
- Providing kangaroo care, even when it was difficult
- Involving the multidisciplinary team, especially for quality-of-life decisions
What Hurt
- Being judged and criticized by staff
- Not being heard or involved in decision making
- Lack of consistency and continuity in clinical care
What To Do
- Involve the family in hands-on care
- Discuss quality-of-life considerations with the family
- Empower families with information
