What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby’s complex and rare health conditions....
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…
249:How to Talk With Children About Child Abuse [REPOST]- Jane’s Story
Knowing how to talk to kids about child abuse can feel overwhelming—but it doesn’t have to be. In this impactful episode of Child Life On Call, host Katie Taylor interviews child abuse prevention advocate Jane Donovan—who also happens to be her mom. Jane shares her...
248: MERRF Syndrome and Motherhood: Raising and Remembering Dahlia-Jessica’s Story
"We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF...