On today's episode of the podcast, Katie interviews Rylee Neal who decided to become a Child Life Specialist from her past experiences being hospitalized with a heart condition called tetralogy of fallot. An experience with a Child Life Specialist during one of her...
Episode 163 | Emma’s Story – A daughter with Trisomy 18
Podcast Show Notes
Katie interviews Emma Springer, mother to Sage who was born with Trisomy 18. Emma shares her journey to parenthood and how they learned of Sage’s diagnosis. Prior to Sage being born, Emma was a pediatric nurse. Emma shares the struggles she went through in Sage’s first few months to find care options. She opens up about how being on social media can be so empowering but also shares some of the challenges go along with it. Through Emma, you will get to know the joy that Sage carries with her each and every day.
Katie dedicates this episode to her dear friend Anna and family who lost baby Jack to Trisomy 18.
[7:12] Meeting her husband at College
[7:41] Enrolled in nursing school
[9:08] Opting out of first trimester screening
[9:51] Navigating Covid in early pregnancy
[10:27] Two blood vessel cord and cysts on the brain at 20 week ultrasound
[11:45] The combination of symptoms were concerning
[12:54] Blood test results coming back with high probability of Trisomy 18
[14:57] Being alone for the appointments was very isolating
[16:24] First time being a patient
[18:16] Getting the call about the diagnosis just before an echocardiogram for baby Sage
[22:00] Learning about Trisomy 18 during clinical rotations
[25:00] Telling her family about the diagnosis
[27:11] Cardiac interventions
[29:58] Hope for the future
[31:29] Respiratory support changed her life
[34:20] Finding things in common with other families
[37:29] Connecting with other parents changed the trajectory of their course
[39:56] Social media causing fast movement with advancements for treatment
[41:30] Recognizing your boundaries
[46:00] Sage loves being around people
[51:20] Growing advocacy skills
[52:48] Compartmentalizing emotions
[55:11] Looking behind the curtain isn’t always pretty
[57:45] Springer Family Foundation Resources
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