172: Nikole’s Story | Diagnosis Misinformation + Never Giving Up

The Rare Life

Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons. Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.”

This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.)

But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter.

This episode is equal parts relatable and uplifting. You can’t miss it!
⠀⠀⠀⠀⠀⠀⠀⠀⠀

Links:

Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!

Join The Rare Life newsletter and never miss an update!

Fill out our contact form to join upcoming discussion groups!

Follow Nikole @martinfamilyshenanigans!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!