Wednesday, April 2, 2014

HLHS Collaborative: March's Action Period Call

The National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) is preparing for its spring Learning Session - where parents and practitioners come together to discuss a range of topics and collaborate on how to transform care and identify best practices for HLHS infants.

If you've ever wondered what goes on backstage with NPCQIC, March's Action Period Calls focused on some of the "behind the scenes" work within the collaborative.   The call began with details about the monthly NPCQIC e-newsletter received by participating cardiac centers and parents.  There is some concern regarding the rate at which the newsletters are opened/read, however, each month, 80-90% of centers have at least one member utilizing the newsletter.  Centers and participants discussed with NPC leaders how the information shared via e-newsletters might be more effective.

Conversation quickly shifted to planning and preparations for the Learning Session taking place April 25th and 26th in Cincinnati. Centers will be busy doing their homework to prepare and sharing tools that others can learn from.
Both practitioners and parents are excited for the upcoming Learning Session, as parent participation has nearly doubled in the last six months and the parent voice will be paramount to driving discussion.  If you're an HLHS parent and interested in joining NPC-QIC Learning Sessions, please contact your cardiac center for details.  A list of participating cardiac centers can be found HERE.  If your center is not currently participating in the collaborative and you'd like to see their name on the list of "Participating Sites," please email with your name and care center.

For parents attending the spring Learning Session, an orientation call will be held next week to help newly attending parents feel comfortable in NPCQIC's process and in working with dedicated groups of medical professionals. 

For those who have attended a Learning Session in the past, please share your experience and for first timers, what questions do you have about what to expect?   Not able to attend? Don’t worry, updates will be provided via Twitter, ‪#‎NPCQICLS‬.

March's calls ended with an “unveiling” of the reorganized Collaborative SharePoint site. This site manages and stores NPCQIC's important information - tools that centers share and data for each participating cardiac center. The site is not available to parents - except for those on the Parent Leadership Team, but keeping with the theme of parent engagement, NPC involved a parent in the reorganization process.  The site looks much cleaner and is easier to navigate.

While we don't always see "behind the scenes," there is much work going on within NPCQIC, all of which assists centers to collaborate and engage in improved care for our children.

We're very much looking forward to seeing many of you in Cincinnati in a few short weeks!  Until then.... virtual heart hugs.


Wednesday, March 5, 2014

HLHS Collaborative: February's Action Period Call

February's Action Period Call updates are brought to you by Trent Neely and Rivkah Reichmann:

Action packed summarizes this month’s call!  Each of the two calls began with a presentation of recent research derived from NPC-QIC's multi-institutional data set.
On Thursday's call, Dr. David Brown from Boston began with discussing a recent study regarding the association between Prenatal Diagnosis (PD) and Morbidity. Previous studies yielded variable results, indicating some benefits, as well as some downfalls. The recent data is now indicating more benefits to PD, such as decreased valve regurgitation, ventricular dysfunction, and shorter ventilator time post-surgery. One area that was not included in the study was parent stress. Parents were able to jump in and provide their experiences with PD and the ability to prepare for hospitalization and the interstage period.  

On Monday's call, Dr. Matt Oster from Atlanta discussed a study regarding home monitoring. There was a discussion of some data on home monitoring. While the data reviewed didn't seem to correlate daily/weekly home monitoring with decrease in mortality or readmission rates, it did seem to impact weight gain. Those with daily home monitoring had better weight gain than those without home monitoring. The nurses and doctors on the call really wanted to hear from the parents -- they were interested in knowing whether home monitoring added to parents' anxiety and stress levels, or helped alleviate anxiety and stress. A good discussion was had of some of the benefits of home monitoring, and some of the challenges.  The study, in particular, did carry it's own limitations, including omitting hybrid patients, excluding those with no echo data, and not having access center specifics.

Following discussion on these NPC studies, teams were updated on efforts made by the Research and Publications Committee. The Parent Leadership Team requested a summary of findings from a recent study on the relationship between Prenatal Diagnosis, birth location, and mortality. This is a valuable tool to help parents understand research studies.  The first "Research Explained" can be found on the SBH blog and NPC-QIC's research page.  Based on the response from this first review, NPC will continue "research explained."  If you have come across a study or abstract relevant to HLHS and NPC's work, please feel free to email a link to and we'll pass it along to the Committee.  Additionally, NPC's Research & Publications Committee is adding two parent representatives to assist in reviewing manuscripts/abstracts and research explained projects.

Each call finished with review of survey results obtained from centers aimed at exploring various interstage practices.  Some of the discussion surrounded center practices regarding red flags, interstage care, and frequency of follow up care. The discussion flowed into a discussion of reasoning behind frequency of visits and proximity to center.  Some discussion was had regarding becoming more transparent in sharing data and protocols and the fortunate timing of NPC's new Transparency Workgroup.

According to parents on the call, February's AP Call was probably the most engaging call of the past year. 
Please keep the discussion going by providing your thoughts and experiences on the following research topics:
Prenatal Diagnosis:  Were you prenatally diagnosed? Was this beneficial to help you prepare or was it too much stress? How did either experience help you with care? 
Interstage Monitoring: Did your center offer daily or weekly home monitoring? Did you find it helpful? More stressful? Less stressful? If you didn't have home monitoring, did you wish you did, or did you feel calmer without the stress of worrying about home monitoring?
Thank you for your continued engagement and your participation.  Each comment shared improves the experience and outcome for future HLHS families.  We look forward to meeting many of you at April's NPC-QIC Learning Session in Cincinnati!


Tuesday, February 18, 2014

Research Explained: Factors that Affect Survival of HLHS Infants

Often times, research studies are published in medical journals that relate to our HLHS community.  Some of these studies spread rapidly through social media sites and become a topic of conversation amongst HLHS parents.

At the request of NPC-QIC's Parent Leadership Team, their Research and Publication Committee reviewed a recent article that gained quite a bit of traction with HLHS families, nationwide. The study was published in the October, 2013 edition of Circulation:  “Prenatal Diagnosis, Birth Location, Surgical Center, and Neonatal Mortality in Infants with Hypoplastic Left Heart Syndrome.

NPC-QIC's Research and Publication Committee reviewed the study and provided the following summary for parents, or "Research Explained" as we like to call it. 

Key Findings: Prenatal Diagnosis, Birth Location, Surgical Center, and Neonatal Mortality in Infants with Hypoplastic Left Heart Syndrome
The journal Circulation published a study in October 2013:  “Prenatal Diagnosis, Birth Location, Surgical Center, and Neonatal Mortality in Infants with Hypoplastic Left Heart Syndrome.”
The NPC-QIC Research and Publication Committee has reviewed this article and a summary of the findings can be found below.
Main Finding from this Study:
The authors of this study concluded that infants with HLHS born closer to a surgical center that performs cardiac surgery on infants have a higher survival rate than infants born far from a surgical center. 
About this study:
·        Why is this study important?

Over the past several decades there has been dramatic improvement in surgical survival in infants born with HLHS. However, ~20% of infants born with HLHS still die within the first months of life.   We are constantly looking for ways that we can improve the survival of infants with HLHS, trying to identify improvements we can make in the way we care for these infants. This study attempts to identify risk factors that we might be able to address to improve this survival.

·        How was this study performed? 

The researchers in this study used information from the Texas Birth Defects Registry and identified 463 infants with HLHS born in Texas from 1999-2007. The researchers then looked at where these infants were born, and what the distance and driving travel time was between their birth hospital and the closest surgical hospital that performed stage 1 surgical palliation (Norwood procedure). The researchers then looked for a relationship between this distance and the likelihood of survival of these infants. 

·        What were the results of the research?

o   Data for a total of 588 infants with HLHS born in Texas between 1999-2007 was available in this Registry.

o   Several factors were found to be associated with better or worse survival for infants born with HLHS:

§     The researchers concluded that infants born far from a surgical hospital (more than 90 minutes driving distance away) have worse survival.

§     Infants with a birth weight <2.5 kg had worse survival.

§     Infants who had surgery at a surgical hospital who performed more Norwood surgeries had slightly better survival after that surgery.

o      While prenatal diagnosis was not by itself associated with better or worse survival, prenatal diagnosis is a very important factor related to distance from the surgical hospital; 66% of infants who were born less than 10 minutes from the surgical hospital were diagnosed prenatally as compared to only 13% of the babies born more than 90 minutes from the surgical hospital.

·        What are the limitations of this study?
Studies that use databases like the Texas Birth Defects Registry are nice because they allow researchers to look at a large number of patients.  This is especially helpful when trying to learn about patients with rare problems like HLHS.  However, one of the problems with research using databases is that there often is incomplete information about the patients. The following are some of the other things that limit the interpretation of findings from this study.
o      Survival was better in infants born in the more recent time period (2003-2007) than in the older (1999-2002) period. More infants were diagnosed prenatally in the more recent time period (49% versus 25.5%) and that number has likely continued to increase in recent years.

o      More infants living more than 90 minutes from the surgical center were Hispanic (30% of mothers born in Mexico) and lived in poverty, suggesting they may have had more limited access to care, including lack of prenatal diagnosis. These socio-demographic factors were not included in the study of factors that may affect survival.

·        What are the takeaway messages considering the results and limitations of this study?

There are many factors that affect survival of infants born with HLHS.  There are some findings from this study that may allow us to improve survival of these infants moving forward.

·        This study did note worse survival in infants with HLHS born far from surgical hospital.  However, there are likely other factors that influence that finding, including the changes in surgical practices over time and socio-economic factors that may influence survival.

·        Prenatal diagnosis is important because it may reduce mortality if mothers living far away can deliver close to a cardiac surgery center.  Prenatal care is also important because we know that infants with HLHS who are born prematurely or with a low birth weight (<2.5kg) have worse survival. We should be doing everything we can to make sure that pregnancies receive adequate prenatal care and appropriate referrals.

·        We need to continue to understand the relationship between surgical volume (the number of specific procedures that are performed at a surgical hospital) and the survival before and after surgery in infants with complex heart problems like HLHS.  Some studies, including this one, have suggested that the more surgeries that are done, the better the survival.  Collaborative work, like that going on in NPC-QIC will be required to understand the answer to this question. 

"Research Explained" is an example of the type of collaborative work you can expect to see between  NPC-QIC and parent partners in the pediatric cardiac community.  We look forward to sharing additional studies and projects which engage and empower HLHS patients and families.


Saturday, February 15, 2014

Shopping for a Cause

Heart Week is coming to a close today but if you are still looking for a way you can give back during Heart Month check out one of these fundraisers we have going on right now.

You can help out Sisters by Heart and get yourself a great gift at the same time. One of our board members, Kathy Baker, is hosting a Virtual Younique makeup party. A portion of the proceeds from every purchase will be donated to Sisters by Heart.

Younique is known for their mineral pigments and their AMAZING 3D fiberlash mascara. If you have ever used Bare minerals, Younique has similar products. The mineral based makeup is free of chemicals and not only looks great but feels great too. What is even better is you can stay in and shop from your couch in the comfort of your own home. If you are having a hard time deciding what to get, check out the "Browse Looks" section of the site for many user uploaded photos. Find more ideas on Pinterest by searching Younique makeup. The mineral pigments can be used wet or dry or a combination of both. Play around and see what look you like best.

If you purchase a collection, you not only save 25% but you will also receive a FREE lipgloss or Mineral Shade. This is a special offer Kathy is running so it won't appear at checkout. If you order a collection, email Kathy at and let her know your name, address and what shade of gloss or pigment you would like.

The virtual party ends on February 17th.

Click the link below to start shopping!

In honor of Heart Month, Jewelry Keepsakes has offered to donate 5% of the purchase price when you buy this Photo Engraved Small Heart Pendant.

The Photo Engraved Small Heart Pendant in silver plating can display a photo of your choice. This elegant keepsake is rhodium plated, lending a durability and appearance that is timeless and classic. The picture is produced by a metal needle making thousands of small impressions into the surface of the pendant with the end result being the image of your selection.

Jewelry Features:

  • Permanently engraved photo of your loved one
  • Usually ships in 24 hours
  • A lovely gift box
  • 20" Free Matching Chain 
  • This keepsake DOES NOT hold cremains

Carry your angel and their precious memory with you everyday with this beautiful memory necklace.

This fundraiser will be going on the entire month of February.
Click here to order your beautiful keepsake.

Sisters by Heart recently opened a Cafe Press shop featuring a wide selection of items. 20% of every sale will be donated to Sisters by Heart and help families battling HLHS. We hope to add more CHD awareness designs in the future. Sport your Sisters by Heart merchandise and help out families going through this journey.

Click here to visit our shop

As always you may also donate to Sisters by Heart directly using the paypal link on the right hand side of our page. Have fun shopping and thank you for helping us continue our mission in providing support and resources to families diagnosed with hypoplastic left heart syndrome.


Thursday, February 6, 2014

HLHS Collaborative: January's Action Period Call

As promised, and in conjunction with HLHS heart dad, Trent Neely, the following is a summary from January's NPC-QIC Action Period Call:

January's call continued some robust conversations regarding Parent Engagement and Social Media. The discussion began with some changes in the data used to measure if centers are engaging and supporting parents - adding the key component of “Support." While it remains important to engage parents in the care of their children, the support that parents receive on their journey is vital as well. A number of centers commented on the importance of education and preparation, and how to avoid overwhelming parents with too much information.

The discussion then shifted to the use of social media and how parents and centers are using it to connect and communicate. They highlighted the connection that the NPC-QIC has made with Sisters by Heart and how they are working together to share information with both hospitals and parents. With the current divide between caregivers and parents in social media, this is a valuable bridge that is being built to provide a better online resource. Both organizations are utilizing Facebook and Twitter as social media outlets and encourage parents to join or follow them there. There was also a conversation about individual centers utilizing these resourses as well.   Click the hyperlinks if you'd like to follow NPC-QIC on Twitter or Facebook.  Sisters by Heart also has a Twitter and Facebook page if you've not located it yet.

The current project that the NPC-QIC is working on is care of HLHS patients through the interstage period. This work has been ongoing for years and will continue. They announced today that work will begin on Phase 2 and will center on Neonatal care. The focus will be on the hospitalization from birth through the Norwood surgery and recovery.

The NPC-QIC Learning Session will be held again in Cincinnati, Ohio on April 25th and 26th.  Parents interested in attending should email  Parents can also connect with their cardiac center's collaborative team for more information.

As a follow up to January's Call, feel free to comment on this blog post and share your experiences regarding how your cardiac care team engaged you, if they are active on social media outlets, and any advice you'd like to leave for the collaborative in this regard.  Many cardiologists and centers follow our blog, so share away!

As always, thank you Trent Neely, for creating a summary of the monthly action calls for all parents to see!


Friday, January 17, 2014

Research Opportunity: Prenatally Diagnosed Moms Need Apply!

As you can imagine, we welcome and receive constant feedback from HLHS families across the country.  Recently, Miami Children's Hospital referred one of their families to Sisters by Heart.  We're so very glad they did, as there is a unique opportunity for single ventricle families to participate in a research study.

Dawn Silverman, a heart mom with a passion for psychology, took her education to a very different level than she thought possible, after her unborn son, Caden was diagnosed with HLHS.  Dawn decided to use her psychological training and her experience as a heart mom, to advance patient centered research in the Congenital Heart Community.

Significant focus on patient centered and driven research makes Dawn's study unique - she is literally the patient and the researcher!  What better way to encourage patient driven research than helping Dawn reach hundreds of single ventricle families.

Dawn and Caden (HLHS, age 5)

Psychology Doctoral Study - Dawn Silverman, LMHC, MEd/Eds

The Lived Experience of Pregnancy with a Neonatal Diagnosis of Single Ventricle Heart Defect: A Heuristic Study. 

The purpose of Dawn's study is to investigate the prenatal experience following the diagnosis of a single ventricle fetus.

The following is a layout of some of the study criteria, procedures and requirements for HLHS families to participate.  Sisters by Heart believes that nearly all prenatally diagnosed families we serve will meet the study criteria.  The committment to participate is small, but may carry significant benefits to future HLHS moms.

Participant Criteria:  Mothers who were informed during their pregnancy that their baby had a single ventricle defect, and whose baby/child with the heart defect is still alive. During that pregnancy, you had to be pregnant with just one baby and received the congenital heart defect diagnosis while you were pregnant (not after the baby was born). All participants will be between at least 18 years of age.

Study Procedures
  • Participants will meet with the researcher for 1 to 3 hours to be interviewed about their pregnancy experiences.
  • Interviews will be recorded.
  • All recordings and information will be kept confidential with no use of participants’ identifying information.
  • The recordings will be transcribed and analyzed by the researcher.
  • Participants will be provided with a summary of their interview (via phone or email) to verify that it is an accurate description of their lived experience.
  • A report regarding the findings from the analysis will be generated.
Benefits: For this study, you may benefit from potentially gaining greater insight into your pregnancy experience. Participants may also gain a level of satisfaction and sense of “paying it forward” by knowing that their participation will also offer a greater benefit to the scientific community. The data participants impart can yield information that can potentially help decrease the suffering of other women who are actually living this experience as well as serve to assist healthcare workers to better meet the emotional needs of the pregnant women they treat.

Time CommitmentParticipation requires about 1- 3 hours. The interview will be conducted at a mutually decided upon secure location. Participants will also be provided with a summary of their interview to verify that it is an accurate description of their lived experience over the telephone or via e-mail. This will require less than an hour of the participant’s time.

Enrollment: To enroll, interested participants should contact the researcher via email ( The researcher will email additional information about the study and eligibility requirements. Women meeting participation requirements will then be emailed information about how to consent to participate in the study. Once your questions are answered, enrollment requires a signature consenting to participate.

Contact:  If you are interested in participating or for additional information, please contact Dawn Silverman at (561) 329-3871 or

Additional information regarding Dawn's study can be found on her research site:

Thank you Dawn, for your passion and empathy for heart moms and in dedicating your doctorate work to improving the prenatal experience post single ventricle diagnosis.  We look forward to reading a summary of your study results once your dissertation is complete! 


Monday, January 6, 2014

HLHS Collaborative: December's Action Call

As mentioned last month, Sisters by Heart will be providing a summary of the dialogue (involving both clinicians and parents) during the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) Monthly Action Period Calls. 

If you'd like to look back and review November's call summary, click here.

For December, the action call began with an update on a newly formed Collaborative work group - a Transparency workgroup.   With great interest in Transparency, invitations were sent to approximately 15 cardiologists, nurses, and parents.  Most encouraging, this group will likely be comprised of a 50/50 split between health care professionals and parents.   The first objective of the Transparency group will be to discuss short and long term goals, legal matters, and then develop an update for the Spring Learning Sessions in Cincinatti.   The initial goal for centers involved in the collaborative will be to share data amongst themselves in order to drive quality improvement at a more rapid pace.  Co-leaders for the transparency work group are:  John Kuglar (cardiologist) and Stacey Lihn (parent).

The call also focused on a review of requirements for centers to maintain certification in the NPC-QIC and how data collection forms were modified to help streamline collected data. The data collected is the vital for the work that the collaborative does and a great deal of work goes into collecting the most appropriate information.

The main topic for December's call was Growth during the Interstage period. Growth of babies during this period is one of the vital pieces of data centers are using to help determine health and success of their patients. Centers implementing interventions, such as using scales at home, conducting a feeding evaluation, and providing red flags to parents, experienced improved growth of infants that they cared for. Centers used to think that HLHS babies just didn’t grow during the interstage.  Through the work of the collaborative, centers don’t accept this notion anymore.   December's call ended with a highlight of some of the work centers are doing to improve interstage growth.  

Thanks again, Trent Neely and all parents who participate on the monthly Action Period Calls for providing input, taking notes and preparing summaries for the HLHS community.