P91 Importance of Nutrition in Newborns with Neuromuscular Conditions

• Published in: Neuromuscular disorders : NMD 2023-10, Vol.33, p.S167-S167
• Main Authors: Nigro, E., Gonorazky, H.
• Format: Article
• Language: English
• ISSN: 0960-8966; 1873-2364
• DOI: 10.1016/j.nmd.2023.07.398

Healthy weight and proper nutrition are essential in people living with a neuromuscular condition in order to maintain muscle strength and overall functioning. Newborns with a neuromuscular condition are especially susceptible to impacts on their weight and overall health affecting their respiratory status, growth, and muscles. We look at newborns diagnosed with Myotonic Dystrophy type 1 (DM1) and the impact that proper nutrition plays in their ability to gain and maintain weight and the effect that this has on their respiratory functioning and overall health. DM1 is a condition primarily characterized by muscle weakness and wasting. Historically these patients were monitored closely and took a watch and wait approach to nutrition, often having struggles with failure to thrive which ultimately caused stress to their respiratory function leading to invasive ventilation and respiratory support. In the newborns followed in our center we reviewed that having early intervention from a nutrition standpoint including earlier insertion of gastroenteromy tube may result in a better outcome in the short and long term. We strive to identify this problem and propose changes to the current practice and awareness by using cases and comparing the outcomes, changing the therapeutic landscape for these newborns.