April is Child Abuse Prevention Awareness Month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse. Today’s guest expert is Jane Donovan, who is a child abuse prevention advocate. "And like we say in...
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.
[5:50] Introductions
[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
[49:30] Hospitalizations
[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
Connect with Emma
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…
215: Ruptured Appendix: Emergent Surgery, 6 Days in the Hospital & Struggles to Discharge
"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it." -Aspen, Willa's Mom In this episode of Child Life On Call, host Katie Taylor and guest...
214: Sacrifice, Advocacy, Joy: Raising a Son with End Stage Kidney Disease – The Ransome Family’s Story
"Sometimes it's really therapeutic though to remember all that you have gone through because I feel like there are times when we look at each other and I'm like how did we get here?" Taylor Ransome We're grateful for our sponsor for this episode, Nestle Health...
