Tuesday, May 13, 2014

What If...

 
Several weeks ago, Sisters by Heart reached out to our HLHS community asking families to submit photos of their heart kids with their care team members to be used in a special project. We are so excited to finally be able to share this special video project that debuted at the Spring National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) Learning Session!  
 
The video features the song “What If” by Five For Fighting; to say the lyrics are powerful would be an understatement. 
 

What If

It is safe to say we expected the crowd to react positively to the video, but what happened next came as a complete shock and truly moved the entire room (parents, cardiologists, nurses, dieticians, quality improvement experts, etc.) to tears.  Dr. Gail Wright, upon watching the “What If” video, wrote down her raw, emotional thoughts to parents, then courageously read them to a room filled with nearly 200 participants:
 

 
What If….?
 
What if…
 
               I told you we are not in control?
 
What if…
 
               I told you that there are not answers?
 
What if…
 
I told you that I wish there was really a Journeyboard, rather than wide open space?
 
What if…
 
               I told you I don’t know?
 
What if…
 
               I told you I don’t understand why this happens either?
 
What if…
 
               I told you I can’t make that part better?
 
What if…
 
I told you a bunch of knuckleheads won’t cough up the money to educate the nurses who are taking care of your baby tonight and that fighting for that is sucking the very marrow out of me?
 
What if…
 
I told you your life has changed forever today, but somehow you will keep walking forward?
 
What if…
 
I asked you how we can go forth together not knowing what’s going to happen?
 
What if…
 
I told you take a picture now in the CVICU so we can laugh together at his high school graduation?
 
What if…
 
I looked you in the eye and told you that your son is a miracle and is why I really do believe in miracles  ?
 
What if…
 
I told you there are literally 300 people today who will be holding your baby in their hands with their focused attention and deepest intentions?
 
What if…
 
I tell someone that taking care of babies with half a heart has taught me how to live whole-heartedly?
 
 
Gail E Wright, MD
 
April 26, 2014
Upon viewing the “What if?” video by Sisters By Heart NPCQIC Learning Session
Cincinnati, Ohio
 

This - yes this - is a prime example of openness and transparency amongst parents and clinicians.  These types of interactions and candid discussions will help reshape the way pediatric medicine is practiced.  Parents and clinicians, coming together as partners, to move mountains.  What better place to start than with pediatric cardiology?  What better time to start than now?

Please feel free to share this post with your cardiac center leaders; let them know you're committed to working as a partner to transform the practice of pediatric cardiology on a broad scale. 

Many thanks to Gail Wright - for taking a giant leap forward and improving upon our work together, as partners, to move mountains for HLHS children - and beyond.  

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Previous Blog Posts

Tuesday April 21st, 2017: Parent Scholarships NPC-QIC 2017

Monday, August 8, 2016: On Finding His Tribe

Thursday, November 19, 2015: You're the General Manager

Monday, July 20, 2015: Fontan Care Package Launch

Monday, June 8, 2015: SBH Supports Full Transparency in Outcomes Data

Wednesday, May 6, 2015: New Care Package Items

Wednesday, April 29, 2015: A Tea Just for You: Heart Mom Comfort Tea!

Monday, March 2, 2015: Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Tuesday, February 17, 2015: NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

Monday, February 2, 2015: Fundraising with Heart: Tink & Key

Thursday, January 29, 2015: January 2015 NPC-QIC Action Period Call Update

Wednesday, January 28, 2015: Fundraising with Heart: The Baby Blue Sound Collective

Thursday, December 18, 2014: Sharing HOPE: An exciting opportunity

Tuesday, September 30, 2014: HLHS Collaborative: September's Action Period Call

Tuesday, August 26, 2014: Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Monday, August 18, 2014: CHD Kids and School Special Services

Monday, August 11, 2014: Using Crisis to Create: The Asher James Foundation

Wednesday, July 2, 2014: HLHS Collaborative: June's Action Period Call

Monday, June 23, 2014: Pink for Paul!

Friday, June 13, 2014: Why There are No "Brothers by Heart"

Tuesday, May 13, 2014: What If...

Wednesday, April 2, 2014: HLHS Collaborative: March's Action Period Call

Wednesday, March 5, 2014: HLHS Collaborative: February's Action Period Call

Saturday, February 15, 2014: Shopping for a Cause

Thursday, February 6, 2014: HLHS Collaborative: January's Action Period Call

Friday, January 17, 2014: Research Opportunity: Prenatally Diagnosed Moms Need Apply!

Monday, January 6, 2014: HLHS Collaborative: December's Action Call

Friday, December 27, 2013: Dual Perspectives: Growing Up with HLHS

Wednesday, December 4, 2013: Take Action: Be Part of the Solution

Tuesday, December 3, 2013: Join Millions for #GivingTuesday

Monday, November 18, 2013: A Mother's Perspective: The Other Sibling

Wednesday, November 6, 2013: A Unique Opportunity with What to Expect

Tuesday, November 5, 2013: Time to Vote!

Friday, November 1, 2013: 2nd Annual Sisters by Heart Avon Fundraiser

Thursday, September 12, 2013: Possibilities: Cord Blood Banking

Tuesday, September 3, 2013: A Unique Partnership

Tuesday, August 6, 2013: Fontan Series: Kylan's Story

Monday, July 22, 2013: Fontan Series: Lily's Story

Monday, July 15, 2013: Fontan Series: Aly's Story

Monday, May 13, 2013: A Heartfelt Donation: Medical Masks in Anya's Memory

Monday, April 22, 2013: Parent's Perspective: What to Pack for the Hospital

Thursday, April 18, 2013: Getting a 2nd Opinion: An Inpatient Perspective

Monday, April 15, 2013: Getting a 2nd Opinion: An Outpatient Perspective

Saturday, February 9, 2013: It's February, Celebrate Black History Month!

Monday, February 4, 2013: A Heartfelt Donation: eBay Foundation

Friday, February 1, 2013: A Unique Collaboration: SBH and the NPC-QIC

Monday, January 28, 2013: NPC-QIC Winter Learning Session

Friday, December 21, 2012: A Mothers Perspective: Feeding issues

Wednesday, December 5, 2012: A Heartfelt Donation: Smart Mom Jewelry

Sunday, November 18, 2012: Heartfelt Donations: aden + anais and The Dorsett Family

Tuesday, November 13, 2012: Gifts from the Heart: Stella & Dot

Monday, November 5, 2012: Creative Donors: United Way Workplace Campaigns

Sunday, November 4, 2012: A Mother's Perspective: Healing a Hurting Marriage

Sunday, October 28, 2013: A Heartfelt Donation: Avon

Saturday, October 27, 2012: A Gift for Our Fighters

Monday, October 15, 2012: Stories of Hope: Tyler Sajdak

Monday, October 8, 2012: A Heartfelt Donation: The Mended Heart

Monday, September 24, 2012: Fun in the Sun: Year Two

Sunday, September 16, 2012: Creative Moms: Warrior Scrapbooking

September 11th, 2012: Remembering Our Heroes

June 6th, 2012: Top Ten Discharge List