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 170 | Courtney’s Story – A daughter with Trisomy 21, AVSD and Pulmonary Hypertension
Podcast Show Notes
On today’s episode of the podcast, Katie interviews Courtney Morey, Mother to Annie who was diagnosed with Trisomy 21, AVSD and Pulmonary Hypertension. Katie and Courtney have such great dialogue and raw conversation in this episode. Courtney shares the positive impacts on her marriage and the questions that arise when receiving a life altering diagnosis. Sharing about her journey of self discovery along the way and how it has changed her view on life, this episode will leave you feeling validated and inspired by Courtney’s strength.
[4:00] Introducing her family
[6:00] Receiving a life changing phone call
[8:24] Misconceptions about Down syndrome
[8:59] Her husband spent time working with children who had Down Syndrome
[10:20] Learning Annie had AVSD
[12:00] Being asked if you are a medical professional
[12:50] Coping by learning about Annie’s diagnosis’s
[15:25] Learning how to ask the right questions
[16:55] Annie’s birth
[18:40] Annie’s first heart surgery at 4 months old
[20:40] Refusing to google and reaching out to other parents
[22:04] Friendships carried her through difficult times
[23:03] Annie coded post surgery
[23:35] Starting ECMO
[26:20] Caring for Annie while on ECMO
[28:42] Pulling them closer together
[30:30] Sharing updates about Annie’s health helped her have a better grasp on the situation
[30:04] How Annie’s story impacted other people’s lives through social media
[32:49] Self care in the hard moments
[35:34] Speaking up about the language we use
[37:41] Giving feedback that is humbling and gracious
[40:08] Receiving feedback from parents
[42:00] Wrestling with the why
[45:40] Meaning in being Annie’s Mother
[47:12] Starting a foundation Annie’s honor
[48:20] Resource hub to help families
[50:10] Singing more alike than different
[52:31] Annie’s perspective keeps things real
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