Monday June 8th, 2015

"Sisters by Heart supports full transparency in outcomes data among hospitals that treat HLHS and other complex congenital heart defects (CCHD)."

Sisters by Heart’s mission is to support, empower, and educate families, particularly newly diagnosed, with Hypoplastic Left Heart Syndrome (HLHS). HLHS is one of the most complex congenital heart defects requiring at least three open heart surgeries, the first to be performed within days of birth. It is essential that HLHS families have accurate, accessible information and data to empower them in making the best decision for their family, including where to seek treatment for their child. To that end, Sisters by Heart supports full transparency in outcomes data among hospitals that treat HLHS and other complex congenital heart defects (CCHD).

The recent story by CNN, “Secret Deaths: CNN finds high surgical death rate for children at a Florida hospital” […/01/health/st-marys-medical-center/], was incredibly distressing. Sisters by Heart believes that medical institutions treating HLHS should be fully transparent in their treatment and outcomes data, including but not limited to: the number of HLHS children treated annually; number of Norwood, Glenn, and Fontan surgeries performed annually; survival rates; complications (number and types); and length of stay. In the absence of transparency, families cannot make informed decisions and children can – and do – die unnecessarily because hospitals with bad outcomes are allowed to continue treating these complex, medically fragile children.

A follow up story by CNN two days ago indicated that the federal agency Centers for Medicaid and Medicare Services (CMS) is investigating St. Mary’s Hospital, as the infants’ treatment in question were all covered by Medicaid. While Sisters by Heart is gratified to hear that CMS is looking closely at St. Mary’s, we also know this is not an isolated incident. There are hospitals operating on HLHS and other complex congenital heart defects that should not be. It is particularly unjust to think that our most vulnerable children are being treated at institutions not equipped to treat them, while infants with private insurance have better options available to them.

It should be noted that there are institutions currently making their data publicly available. [See CNN’s list here:…/2015/06/health/pediatric-heart-surgery/]. However, it is essential that there is consistency in the types of data released and the way that data is measured in order for the data to be truly meaningful for families. And it is our firm belief that every institution that treats HLHS and CCHD children should make their data publicly available.

While voluntary transparency by some institutions is promising, Sisters by Heart believes it may move too slowly and that too many babies will die unnecessarily in the interim. It is our firm belief that not all hospitals currently treating HLHS infants and those with other complex congenital heart defects should continue to treat these children. We call on all pediatric heart programs to publicly release their outcomes data, and to support the empowerment of parents and families to make decisions based on objective, factual information. Sisters by Heart stands committed to ensuring that data transparency happens quickly – whether through voluntary or regulatory action processes.


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