Discover how Child Life Specialists play a pivotal role in transforming the care experience for children with kidney disease and providing essential support to their families. "As a child life specialist, watching my tiniest patients grow and accomplish so many things...
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
Connect with Courtney
Shop for Spoonie Threads here!
Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.
Parents, download our free parent starter kit.
When you download our starter kit, you’ll learn how to:
- Give medicine to your child without it becoming a wrestling match
- Prepare your child (and yourself) for a shot so they can feel less anxious
- Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.
Child life specialists, get affordable PDUs on-demand here.
Shop for your CLOC gear here
You Might Also Like…
211: A Son Born with End-Stage Kidney Disease (Part 1): Lyndsey’s Story
"Having a medically complex child, it's like everything's fine. And then, you know, we have a morning where we've thrown up a lot or our blood pressure is too low, and it just doesn't look good. You just never know what you're going to get." - Lyndsey, Episode 211 In...
210: Connection, Healing, and Love: Insights from Patrice Karst, Author of The Invisible String
"Love is the most powerful force in the universe, and the invisible string is a testament to the connections that bind us all." - Patrice Karst In this special Child Life Month episode, Katie Taylor sits down with Patrice Karst, the beloved author of "The Invisible...