Monday, March 2, 2015

Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Registration for the NPC-QIC 2015 Spring Learning Session is now open! Sisters by Heart and NPC-QIC want to send YOU to the Spring Learning Session May 1-2, 2015! 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).

Last November, HLHS parents Erica Isakson (Colorado) and Matt Ulrey (Florida) attended Learning Session 10 for the first time after being awarded a parent travel scholarship. Their testimonials speak volumes to the work NPC-QIC is doing to improve the lives of children born with HLHS and their partnership with HLHS parents:

"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

(Scholarship Awardees - Erica, Scott, and Carmen)

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 March 16, 2015. In order to be considered, please send an email with "Learning Session Scholarship" in the subject field to 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.

Awarded scholarships will be announced via email by March 23, 2015.  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

(Parent Dinner, Cincinnati 2014)

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

In order to receive the discounted room rate for the conference, please use this link to make hotel arrangements:

(Sisters by Heart Board Members, Cincinnati 2014)

We look forward to seeing you in Cincinnati in May!


Wednesday, February 25, 2015

SBH News: New Faces

As many of you know, Sisters by Heart experienced unprecedented growth in the past 3 years, both in the families we serve (we're almost at our 1,000th care package!) and the heart community as a whole.  As more surgical centers learned of our valuable services, our need to restructure and expand our board became abundantly clear.

Today, we're thrilled to announce our board restructuring and introduce you to the New Faces of Sisters by Heart.  Our New Faces are denoted with an asterik (*).  

Stacey Lihn
Stacey co-founded Sisters by Heart in December, 2010.  After giving birth to her daughter with HLHS, Stacey’s taken on several roles in the pediatric cardiac field including Parent Lead with the National Pediatric Cardiology Quality Improvement Collaborative (“NPC-QIC”), Transparency Workgroup Co-Lead with NPC-QIC, and Mortality Workgroup Member with NPC-QIC. Stacey also serves as a Public Member of the American Board of Pediatrics Foundation whose mission is to improve the quality of health care during infancy, childhood, adolescence, and transition to adulthood.  Stacey works as a paralegal in Phoenix, Arizona and is also a certified Reiki Master.  She firmly believes parents play an equal role, as partners with clinicians, in their child’s healthcare.  Stacey continues to empower families affected by HLHS and works with clinicians to bridge the gap between patient and provider.

Jenny Lincoln
Secretary and Director of External Operations
A founding member of Sisters by Heart, Jenny plays a valuable role within the organization, as well as in the heart community. She is a State of Michigan Newborn Screening Quality Advisory Committee Member, and a member of the Michigan Newborn Screening Critical Congenital Heart Defect Advisory Committee. Her work with the interstage team at C. S. Mott Children's Hospital at the University of Michigan has allowed her the opportunity to participate and contribute to better outcomes for newly diagnosed and interstage families through the NPC-QIC, which she has been a part of since 2012. Jenny holds a Masters Degree in Administration from Central Michigan University and works for the Dow Chemical Company in Michigan.

Amy Bennett

A founding member of Sisters by Heart, Amy brings a wealth of financial and nonprofit experience to her role in the organization. Amy holds both her CPA and her JD, and provides financial and accounting consulting to nonprofit organizations. She is an active member of the heart community, as a parent partner of the NPC-QIC as well as serving on her home hospital’s Family Advisory Council. 

Erin Acevedo*
Program Events Coordinator 
Erin joined Sisters by Heart in 2014. Her background in media communications, as a radio personality and event organizer, makes her an ideal addition to our organization. She creates a Sisters by Heart presence at hospital events across the country. Erin is a parent partner of the advisory council with NPC-QIC, as well as a member of the Congenital Heart Defect/Disease Alumni Parent organization at Miami Children's Hospital.

Kathy Baker
Director of Marketing
A founding member of Sisters by Heart, Kathy’s contributions are many – from naming the organization to all of its branding.  Kathy has a Bachelor degree and 10+ years’ experience as a graphic artist. Her graphic design skills serve her well in her employment with the Charleston Newspapers.  Kathy is responsible for the development of our organization’s marketing materials for print and online promotions. Kathy is also active with her local American Heart Association and assisted in the successful implementation of newborn pulse ox testing in the State of West Virginia.  

Jennie Briend*
Director of Technology

Jennie joined Sisters by Heart in 2014 bringing her technological expertise to the organization. Jennie is a parent partner with NPC-QIC and has presented at NPC-QIC Learning Sessions. She is active at Lucile Packard Children’s Hospital at Stanford as the Single Ventricle Heart Center Family Advisory Council lead.  Jennie’s experience as a project manager at Extraview Corp, where her tasks include customizing bug tracking software and quality assessment, makes her instrumental to our organization’s future.

Stacie Jackley
Director of Internal Operations

Stacie joined Sisters by Heart in 2011 and acted as a Regional Coordinator for our Linked by Heart Northeast Region. In 2013, Stacie procured a partnership with The Wharton School of the University of Pennsylvania’s Social Impact Consulting (SIC) team, resulting in SBH’s complete restructure and board enhancement to more effectively implement our mission. With Stacie’s advocacy, our organization was chosen over 60+ non-profit organizations applying for SIC’s assistance. Stacie is also a Family Partner Volunteer and Parent Advisor for the Cardiac Center at the Children’s Hospital of Philadelphia, and works as a Certified Reiki Master/Teacher.

Laura Moore*
Director of Grant Writing

Laura joined Sisters by Heart in 2014. She became a “heart mom” in April of 2011, when her second daughter Lillian (Lilly) was born with HLHS. Laura grew up in Washington D.C. and later moved to Phoenix, where she currently resides. Laura is an Elementary school teacher, specializing in English as a Second Language Instruction. She holds as B.A. in Political Science and a Masters in Elementary Education. Lilly’s journey has greatly inspired her to give back to the HLHS community, and to raise continued awareness for Congenital Heart Defects.

Diane Pickles*
Director of Development

Diane joined Sisters by Heart in 2014, having been actively involved in NPC-QIC for 2 years, serving as Chair of the Business Advisory Committee and a member of the Steering Committee. She is a Vice President of M+R, a national advocacy consulting firm and has extensive experience leading both state and national public policy campaigns.  A long-time volunteer for the American Heart Association, she served as a Massachusetts Go Red spokeswoman in 2013, is Vice Chair of the Massachusetts chapter’s Statewide Advocacy Committee, and received the Ray and Gina Driscoll Heart and Minds Lifetime Achievement Award in 2014.  Diane has volunteered on several initiatives with Boston Children’s Hospital and was a Faculty Editor of “Pediatrics in Practice: A Health Promotion Curriculum for Child Health Professionals”.

Natasha Sawyer
Director of Communications

Joining Sisters by Heart in 2012, Natasha took on the role of communicating with families and heart centers. She is also a valuable contributor as a parent partner with NPC-QIC. She has been a featured guest speaker at the Children's Hospital Association conference, NPC-QIC Learning Session 10, and at All Children's Hospital's Parent Education Event "Matters of the Heart." She is very active at her home heart center as a parent adviser for All Children's Hospital's Heart Institute.

As a Board, we could not be more excited about the growth we've experienced and the new talent we've recruited to cotinue and expand our mission. Expect great things to come!


Tuesday, February 17, 2015

NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

The numbers reported this week by the Centers for Disease Control and Prevention do not represent the current state of outcomes for infants born with HLHS.

Last week the Centers for Disease Control and Prevention (CDC) posted information about a study that has recently been published in the Journal of Pediatrics called Differences in Survival of United States Children with Birth Defects: A Population-Based Study.  

Purpose: It is important to understand what question the researchers are attempting to answer when evaluating a research study and its results. The purpose of this particular study, which was performed by a group of researchers on behalf of the National Birth Defects Prevention Network, was to evaluate possible racial or ethnic differences in survival of children born in the United States with various birth defects, ranging from congenital heart defects (CHD) to gastrointestinal defects to neurologic defects. The purpose of this study was not to describe the current state of survival in the United States for any of these birth defects.  

Methods: It is also critical to understand the methods that the researchers used to answer their question. These researchers chose to use a birth defect registry that was active in several states: Arizona, Colorado, Florida, Georgia, Illinois, Massachusetts, Michigan, Nebraska, New Jersey, New York, North Carolina and Texas. In fact, some of the states had incomplete information from parts of their state. For example, births from New York City were not included in the New York state information. Importantly for HLHS, the birth defect registry captures all live births, including those infants whose parents elected comfort care only. 

All studies have limitations to their methods. In the case of this study, the authors note extensive limitations in their paper. Most published studies have ~1 paragraph describing the limitations; this paper includes 4 extensive paragraphs describing the limitations. Some of these limitations include possible misclassification of birth defects and potential misclassification of deaths. It is important to note again that the purpose of this study was not to describe the current state of survival in the United States for these birth defects. If these authors wanted to answer that question, they would need to use different methods and use more current survival information. 

Results and comments: This paper has some important results. The researchers found that children with birth defects born between 1999-2007 to non-Hispanic black and Hispanic mothers have a lower survival rate than those born to mothers of other ethnicities. This was especially true for children born with CHD. We do not know if this is still true in infants born with these birth defects in 2015, but this result should give us pause and cause us to look at our systems of care to make sure we eliminate any ethnic disparities in outcomes in our babies with CHD. Unfortunately, the CDC did not focus on this important finding when posting the results of this study. Instead they focused on the mortality rates of various birth defects noted in this study. In our opinion, the CDC webpage is misleading as it emphasizes the mortality rates noted in this study rather than the results of the purpose of this study, the ethnic differences in mortality rates during that time period (1999-2007). This data does not reflect current mortality rates. 

What is the current state of outcomes in infants born with Hypoplastic Left Heart Syndrome?  The most accurate and up-to-date information about survival for infants born with HLHS comes from the Society for Thoracic Surgeons (STS) registry, the NPC-QIC registry, and publications that look at longer term survival. The STS tracks survival until hospital discharge for all patients who undergo surgery for congenital heart disease for nearly all centers performing these surgeries in the United States.   

·  For the time period 2010-2013 there were 2177 Norwood procedures performed for HLHS at STS centers and there was an average survival to hospital discharge of 83% among all centers. 
·  For the year 2013 there were 714 Norwood procedures performed in STS centers with a 85% survival rate to discharge

For information about survival after hospital discharge, in the “interstage” period and beyond, we need to turn to the medical literature since STS only tracks survival to hospital discharge following surgical procedures. There have been several reports describing survival after discharge following the Norwood procedure.  

·  The NPC-QIC registry historically has demonstrated interstage survival of ~90-92% and more recently (since January 2013), interstage survival in centers participating in the NPC-QIC collaborative is approaching 95%.
·  The Pediatric Heart Network Single Ventricle Reconstruction Trial enrolled infants with single ventricle between 2005 and 2008 and looked at two different surgical approaches to the Norwood procedure. This study enrolled 549 infants (not all of them had HLHS) and the survival rate to 1 year of age was ~73%. It is important to recognize that these patients were operated on and followed at 7 Pediatric Heart Network centers and that this study was started almost 10 years ago.

The National Pediatric Cardiology Quality Improvement Collaborative remains dedicated and committed to improving not only survival but also quality of life for children with HLHS and their families. While we recognize that we have a long way to go in our efforts, we have seen tremendous improvement in outcomes in HLHS in the past decade. The numbers reported by the Centers for Disease Control and Prevention do not represent the current state of outcomes for infants born with HLHS, nor do they reflect the hard work done by caregivers and parents in improving outcomes for our patients.

Jeffrey Anderson, MD, MPH, MBA, Improvement Advisor and Research Committee Chair
Robert Beekman, MD, NPC-QIC Chair
Carole Lannon, MD, MPH, Improvement Design and Implementation Lead
Stacey Lihn, NPC-QIC Parent Lead and Sisters by Heart President
Laura E. Peterson, BSN, SM, Senior Quality Improvement Consultant


Wednesday, February 4, 2015

Research Explained: Do Single Vents and Developmental Delays Go Hand in Hand?

Installment #5 of Research Explained is here!  Thanks to NPC-QIC's Research and Publications Committee members, Karen Uzark, Sarah Ortiz, and Jean Ballweg, for preparing the following for single ventricle patients and parents!

The Journal of Pediatrics published a study in September, 2014: “Factors Associated with Neurodevelopment for Children with Single Ventricle Lesions”

Key Findings: Factors Associated with Neurodevelopment for Children with Single Ventricle Lesions

Main Finding from this Study:

While there has been great improvement in survival for patients with hypoplastic left heart syndrome (HLHS) and other similar single ventricle lesions that require the Norwood procedure, these patients have a higher prevalence of developmental and behavioral abnormalities. Many studies on neurodevelopmental outcomes in this high-risk group of children have been from a single center and/or describe outcomes in infants or school-aged children. Little is known about the assessment of development in children with single ventricle at preschool age.

This study describes neurodevelopmental outcomes at 3 years of age in children with HLHS and other forms of single ventricle who previously participated in the multicenter Single Ventricle Reconstruction Trial, a comparison of two groups who were randomly assigned to get one shunt type or the other at the time of their Norwood surgery. The authors of this study concluded that on average, children with HLHS or single right- ventricle have impaired neurodevelopment at 3 years of age compared to the general population. Lower scores are unrelated to their shunt type.  Delay was detected in at least one area of development for 51% of the children. 

About this study:

• Why is this study important? 
This is a very important study because this is a very large group of patients with this heart defect (more than 200) from many different medical centers about whom we have a lot of very good baseline information from the initial Single Ventricle Reconstruction Trial (SVR-I) done when these patients were infants.  While infants with low scores on earlier developmental testing at 14 months of age were more likely to have low scores at 3 years of age, their analysis suggests that even when 14-month test scores were in the normal range, children with single ventricle may be at risk for developmental impairment at preschool age and beyond.  It will be very important to continue to follow them over time, even for their entire lives. 

• How was this study performed?   
This study invited parents/guardians of all patients who had been previously enrolled in the Single Ventricle Reconstruction trial who survived without heart transplantation to complete annual questionnaires on the child’s development, behavior, quality of life, and functional status. Information about interim medical history was also collected. Development at 3 years of age was measured with the parent-completed Ages and Stages Questionnaire (ASQ). Behavior was measured with the Parent- Report Behavior Assessment System for Children (BASC). Parents also completed the Pediatric Quality of Life Inventory and the Functional Status questionnaires. The main comparison was between scores in the single ventricle group and the general population scores. In addition, they looked at differences in scores between the two types of surgical shunts and tried to identify any factors that were more common in patients with the greatest developmental delays. 

• What were the results of the research? 
o 203 completed the Ages and Stages Questionnaire (ASQ)

o At 3 years of age, average scores for each area of development measured on the ASQ questionnaire were significantly lower than those for the general population at the same age. 
  • The percentage of patients with single ventricle with delayed scores was 20% for the Communication scale, 30% for the Gross Motor scale, 35% for the Fine Motor scale, 24% for the Problem Solving scale, and 17% for the Personal-Social scale. 
  • Delay was detected in at least one area for 51% of the group.
  • Scores did not differ by type of shunt.
o Infants with low scores on earlier developmental testing at 14 months of age were more likely to have low scores at 3 years of age, however, even when 14 month scores were within the normal range, some children were still at risk for developmental delay.

o  Children with more complications and longer hospitalization after Norwood surgery, hearing or vision problems, and those with persistent feeding problems at 2 years of age were more likely to have lower developmental scores. 

• What are the limitations of this study?
Developmental and behavioral questionnaires were not completed for all eligible children in the study. The study also relied largely on parental report. 

• What are the takeaway messages considering the results and limitations of this study? Children with HLHS or other single right-ventricle anomalies are at increased risk for developmental impairments at 3 years of age.  While there are some factors associated with increased risk for impairment, many children without these risk factors develop impairments, and thus monitoring is important for everyone. Development in these children should continue to be monitored throughout infancy and childhood to improve recognition of delays and potential for services to improve outcomes.

This research, along with parent collaboration, will assist NPC-QIC in designing Phase 2, including aims to improve developmental outcomes for children born with HLHS.  NPC and SBH are thrilled to work together to better the landscape of HLHS, from initial diagnosis to age 1 (Phase 2), and beyond!


Monday, February 2, 2015

Fundraising with Heart: Tink & Key

Today, on the second day of Heart Awareness Month, Sisters by Heart is thrilled to share our partnership with Tink & Key to promote CHD awareness!

If you haven't discovered Tink & Key, you're missing out! Tink, owned by a fellow heart mom, sells adorable tees and jeans for kids and adults. They're probably best known for their "Zipper Club Member" tees.

"Little Warrior"

Need we say more?

Even if you don't have a child with a heart defect, there are several adorable items suited for all family members (even mom and dad)!

"Fearfully & Wonderfully Made"

"Miracle Baby"

We discovered Tink & Key before realizing the force behind it was fellow heart mom, Stephanie. Stephanie's son, Trent, was born with Tetralogy of Fallot and had open-heart surgery at 5 weeks old.

4 years later, that little boy is thriving and pushing CHD boundaries.

You can learn more about Trent's inspiring story here.

Beyond raising CHD awareness, Tink & Key is providing a wonderful opportunity for CHD families and Sisters by Heart.

From Feb 1st - Feb 14th, 
all tees and jeans are 25% off with promo code: sistersbyheart

And, for the entire month of February,
 SBH is Tink & Key's designated charity and will receive a portion of proceeds from all sales!

So grab those zipper club tees and flaunt your CHD awareness this month, all while supporting Sisters by Heart!


Thursday, January 29, 2015

January 2015 NPC-QIC Action Period Call Update

Thanks again to Trent Neely (dad to Avery, HLHS), for January's call summary.  If you're not a member of NPC-QIC's HLHS Parent Advisory Facebook Page, please check it out.  It's a great place for updates and a simple avenue to engage in the HLHS collaborative.  For those new to the HLHS community, the National Pediatric Cardiology Quality Improvement Collaborative holds monthly calls to discuss ongoing work and action items to continue tackling HLHS and improving the treatment and outcomes for our children.

January 2015 Call Update

After a winter holiday break, the Action Period calls resumed with a flurry of activity! The call began with an announcement of three new centers to the Collaborative, bringing the total to 58 centers. Welcome UF Health Shands Children’s Hospital, Golisano Children's Hospital, and University of Minnesota Masonic Children's Hospital.
A report of research followed, with a study conducted through the NPC-QIC database, examined the timing of Stage 2 palliation. There is wide variety in the timing of the second surgery between centers and this study looked to evaluate any risks or benefits to an early or late timing of Stage 2. Of the data analyzed, there was a variation in timing that ranged from 3 ½ to 7 months with the early group having Stage 2 prior to about 5 months. There were some interesting findings that I’m sure will help centers think about the optimal timing of surgery and what shorter or longer wait times for the Glenn might translate to long-term. This research is currently being prepared for publication so look for it in an upcoming Research Explained from the NPC-QIC. An abstract is available here:…/…/Suppl_2/A12605.abstract

An update on a new project to develop a Book of Hope through Empowered by Kids was then provided. This book will include stories from parents, patients, nurses, a cardiologist, and a surgeon to help newly diagnosed parents through their journey. Deadlines for submissions are January 31, 2015, so get your submissions in ASAP!  If you need further information, please read our recent blog post on the HLHS Book of Hope:…/sharing-hope-exciting-opp…

There was then a brief discussion of funding opportunities that the Collaborative is pursuing to help further the current work as well as the planned Phase 2 project. Phase 2 is moving forward and building upon Phase 1 which was limited to just the Interstage period. Phase 2 will focus on diagnosis through the first year of life and will include additional data about neuro-development and family quality of life.  Phase 2 will also incorporate parent reported data collection as well.

There is a lot of new and exciting developments for the Collaborative; it's energizing to see the ongoing work for HLHS children and families, and in turn, improving the care and treatment for all critical congenital heart defects.

Wednesday, January 28, 2015

Fundraising with Heart: The Baby Blue Sound Collective

Last month, Sisters by Heart was honored to attend Baby Blue Sound Collective's performance in Miami, FL. The Baby Blue Sound Collective is a musical ensemble composed of pediatric heart surgeons, cardiologists, nurses, and other CHD care providers from around the country. The BBSC currently performs at many of the pediatric cardiology and cardiac surgery medical conferences throughout the USA and Europe: the personnel of the band is different for each performance, and primarily depends upon who is on the course faculty at the particular meeting. The songs and genres vary, but include classical, jazz, pop, musical theater, blues and rock.

We were blown away by the talent of this incredible group of clinicians! The BBSC encouraged those in attendance to make donations throughout the night - and through their generosity, Sisters by Heart raised over $600! We are so grateful to Dr. Gil Wernovsky and the entire BBSC crew for their continued dedication in supporting CHD families.

Be sure to follow the BBSC on Facebook and their blog to stay informed on upcoming events!