Parenting a Medically Complex Child: Advocacy, Mental Health, and Luke's Story (Loss, Epilepsy, NICU)

Megan Gast, mom to twins Jet and Luke, sits down with Katie to tell us her story of maneuvering through the NICU, receiving Luke's epilepsy diagnosis and grieving his loss. Megan illustrates how her postpartum depression impacted her initial relationship with Luke as he was in the NICU.

She also reveals some insight as to properly advocate for support not only for Luke but for herself as a parent constantly being in emergency mode. Ultimately, we find out how she is able to find peace in knowing that Luke has always been in control of his own story, and how she is able to keep his memory alive in Luke's Lifeline Foundation.

Time Stamps

1:32 - Introduction to Megan

4:32 - IVF Journey

9:22 - Bringing Jet and Luke into the World

17:05 - Luke's Hydrocephalus

26:37 - Creating Bonds with the Twins

29:03 - Postpartum Depression and PTSD

31:34 - Finding a Support System

36:18 - Moving back to Nebraska

44:56 - Building up a Community

46:52 - Luke's Lifeline and Choosing His Own Story

53:53- Advocating for Luke in the PICU

59:05 - Being Luke's Mom

Resources

https://lukeslifeline.org/

To listen to more episodes, head to insidethechildrenshospital.com

This podcast is for educational and informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Every child and family is different. Always talk with your child's healthcare team about questions or decisions related to their care.

The experiences and opinions shared by guests are their own and do not necessarily represent the views of their employers, healthcare organizations, or Inside the Children's Hospital.