Tuesday March 21, 2017

Parent Travel Scholarships - NPC-QIC 2017 Spring Learning Session!

Registration for the NPC-QIC 2017 Spring Learning Session is now open! Sisters by Heart and NPC-QIC want to send YOU to the Spring Learning Session May 18-20th 2017! Together, Sisters by Heart and NPC-QIC are once again offering parent travel scholarships, valued at $500 each, to four parents to attend the learning session in Cincinnati, OH. If you are new to the HLHS world, haven’t heard of NPC-QIC before, or have questions about what NPC-QIC does, we have put together some information for you.

The National Pediatric Cardiology Quality Improvement Collaborative’s mission is to improve the care and outcomes for children with cardiovascular disease. NPC-QIC’s current quality improvement project is working to improve survival and quality of life for infants with Hypoplastic left heart syndrome (HLHS). The collaborative is made up of clinicians from fifty-eight (58) centers from across the country and parents of children needing a Norwood (i.e. HLHS).

Here is what some past travel scholarship families have had to say about the event:

"Attending the NPC-QIC Conference was rewarding at multiple levels: First, being in a room of cardiac professionals and parents who are focused and are driven to improve the care of our HLHS kids, and their families, touched my heart and made me further grateful for these dedicated people. I also appreciated hearing that the current Collaborative statistics (which are really good!) still aren't good enough for these professionals. Our kids are fiercely being fought for behind the scenes (as well as on the front lines) and that is incredible to see, first hand. Finally, this group allows their centers to be vulnerable for the sake of improving the HLHS outcomes and that is amazing!

I look forward to be a contributing part of the Collaborative efforts at future conferences and at our center, and hope to share the work being done to encourage and bring hope to newly diagnosed, and current, HLHS families in Colorado and surrounding areas.

Thank you so much Sisters-by-Heart for the opportunity to meet so many amazing people and to continue my efforts to help our center help more HLHS families! It was great to finally meet all of you, too!" - Erica Isakson

"As a Dad of a 3 year old (Roman) with HLHS, I would like to start off by thanking Sisters by Heart for the great opportunity to attend the fall 2014 learning session.  Leading up to the learning session I was a little nervous it was going to be a bunch of healthcare professionals speaking in a langue I didn’t understand.  Once I got there I realized I could not have been more wrong.  The learning session featured individuals from about 50 centers which included doctors, nurses, and parents. They all come together for one common goal - Improving care for patients with HLHS and their families.  I am not sure what I enjoyed more either participating in the learning session – or getting to interact with other parents of children with HLHS of all different ages.
During the learning session it was clear that the medical professionals really valued our opinions. I was asked several different questions while I was there ranging from time of diagnosis all the way up to his current care. I know all HLHS parents remember that moment when they find out their child has a life threatening condition. During the learning session we spent hours discussing what could have made the time after that moment better. We heard great examples of things to do, and horrible examples of what to avoid.  
I also was excited to meet with parents of other children with HLHS.  I was able to meet parents with children of all ages from babies to college students.  Hearing their stories provided me great hope. Generally as a parent of HLHS you are always looking so short term; this was a good opportunity to look long term. I thought it was awesome to hear everyone’s stories, especially the ones about the older children.

One last aspect of the conference I wanted to mention was how great it was to see hospitals working together to better care.  It would be really easy for the top hospitals to keep all there data in-house and not share it with other hospitals, but that does not happen with this group.  All involved are excited and even eager to share their best practices and success stories.
I came away with great comfort knowing there are some many intelligent people who care so greatly about our children, and look forward to being able to attend future learning sessions." - Matt Ulrey Dad of Roman age 3

Parents with a single ventricle child, who required a Norwood or Norwood varient surgery may attend the learning session and/or apply for a travel scholarship.  You do not need to be currently involved with your child's interstage clinic, however you are encouraged to reach out to your child's center prior to the learning session. 

Sisters by Heart will be accepting travel scholarship entries until April 1st 2017. In order to be considered, please send an email with "Learning Session Scholarship" in the subject field to info@sistersbyheart.org with the following information:

HLHS child's name and DOB
HLHS child's hospital
Have you contacted your child's center to inquire about funding to attend the Learning Session?
A brief paragraph on why you would like to attend

If you are interested in attending and can make arrangements for childcare/time off work, please apply! This is such a wonderful opportunity to share your opinions, answer questions from a “professional” perspective as a parent, and most importantly be involved in helping to improve care for HLHS children.

Parents awarded scholarships will be responsible for making their own travel arrangements.  If you have questions regarding the scholarship process, don't hesitate to email us at info@sistersbyheart.org.

If you're already planning on attending the learning session, please make sure to register for the event at NPC-QIC's website

We look forward to seeing you in Cincinnati in May!




On Finding His Tribe

When I was maybe 10 or 11, I read a book about a girl named Dawn, who had cancer. I remember her going to “Cancer Camp” and how much it meant to her to be around her peers, to feel “normal.” For some reason, the idea of that camp stuck with me. I just never knew how close it would hit to home with my own family years later.

My 6-year old son, Bodie, has Hypoplastic Left Heart Syndrome (along with a few other fun surprises). For the past almost 7 years, I have immersed myself in the “Heart Community.” I have made friends with other heart moms, some only virtually through social media, some only in person, and some that started virtually but eventually became in person relationships. In it, found MY tribe. It is full of amazing women with stories like mine, who have children like my son. Women who share my fears, and who talk me off of my anxiety ridden ledge at 2am. We are there for each other through this crazy journey.

I have introduced some of these women to my family, and we do things with the ones who live locally. My son, and his 9 year-old heart healthy sister, get to see other kids like them occasionally. I thought that was enough. I really did.

I was wrong.

MY tribe has been wonderful for me. But it hasn’t quite met the needs of my son and his sister. And I didn’t even realize it, until last weekend, when we went to our first Heart Camp. And then I saw it. The profound connections made between survivors. The look that simply says “I’ve been there. I get it.” The sense of comradery, of feeling “normal” in a world where their scars make them anything but. The overwhelming shared hope of seeing older survivors living amazing, authentic lives in spite of their very serious heart conditions.

Meeting up with a heart family here or there, or once a year at a Heart Picnic is wonderful. There is a very valuable space for that. But, honestly, there is a vast difference between a few hours spent with other heart families – and 72 hours straight spent immersed in the heart culture with tons of families (there were over 60 families at our camp!).  It is difficult to even put into words what our weekend at Heart Camp meant to us as a family.


Perhaps the best way to explain it is to describe the most profound moment of the weekend for me. My sweet boy, at the tender age of 6, has just in the past 6 months or so started to become self-conscious about his scars. This summer, he has wanted to keep his rash guard on anytime he is swimming.  On Saturday night, the camp was offering all sorts of fun activities, including tattoos and face painting. My son wanted to put a tattoo on his chest. But he wouldn’t take his shirt off. He asked me if we could just go to the bathroom and do it instead, and then started to make up all sorts of excuses for why he didn’t want to get the tattoo after all.

I was at my emotional wits’ end. Despite my reassurances that it was heart camp and he didn’t need to worry about his scars, he wouldn’t budge. I didn’t know how to help him. And then, something extraordinary happened. Our family had been assigned a mentor, an amazing teenager living with heart disease, to shadow us for the weekend. Our mentor was Kenny. When Kenny realized Bodie was struggling, he came over, took his shirt off to show his own scars, and began to talk to Bodie. Before I knew it, we were surrounded by 3 mentors, all teenage boys with their shirts off in the cold evening air, just to show my son that his scars weren’t anything to be ashamed of. And they were reassuring me that they, too, had all gone through it.

Kenny took Bodie a bit away from us to talk to him. I don’t know what their conversation entailed. All I know is that, in a very short period of time, my son had his shirt off and wanted to show me his scars and talk about how brave he was.

I know this is a journey, and this won’t be the last time we talk about my son’s scars. But last weekend was a valuable stepping stone in his journey to acceptance. And for that, I will be forever grateful. That moment would never have happened without heart camp. I love my son, and I support him in every way I can, but, at the end of the day, this is HIS journey, and I don’t know what it’s like to walk in HIS shoes. But his peers at Heart Camp do.

On Saturday morning of our camp, we had the opportunity to attend a Q&A panel with 12 of the teen mentors. Upon being asked what had helped ease their journeys the most, every single one of them recommended Heart Camp. And I don’t doubt it. The benefits are enormous. It was clear from looking at how close all of the teen mentors were that their experiences at Heart Camp had fundamentally shaped their views on their hearts and their futures. They were an exceptionally inspiring and tight knit group of young adults.

We are profoundly lucky in California, since we have 2 heart camps to choose from, Camp Taylor in Northern California (where our family was last weekend) and Camp del Corazon in Southern California (which starts at age 7). With a family camp for younger kids, and options for siblings to attend youth camp alongside the CHDer, Camp Taylor was the perfect choice for our family.  And one that was absolutely worth every minute of the 5 hour drive there. Not every state has 2 options within driving distance. But there ARE camps across the United States. We at Sisters by Heart are working on compiling a list – if you know of one, please let us know so we can add it to our list! If you have a CHDer of school age, I could not encourage you enough to see whether there is a heart camp near you.  We met one teen mentor who flew from Denver to California for Heart Camp each year. I promise, the experience your child gains will be 100% worth it!

Before heart camp, I had MY tribe. Last month at Heart Camp, our son found HIS tribe.  One that he will walk with for the rest of his life. And for that, we are inexplicably grateful. As they so beautifully put it at Camp Taylor, heart camp is where "Kids Meet... Scars Blend... Wonders Happen!!!



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