Thursday, December 18, 2014

Sharing HOPE: An exciting opportunity

Hello Sisters by Heart Family!  SBH is invited to participate in a hugely impactful project with Empowered By Kids (

Sisters by Heart was founded from a deep desire to spread Hope to newly diagnosed families. How would you have reacted to a "Book of Hope" containing stories of children and families living with an HLHS diagnosis at the time of your diagnosis?  Sisters by Heart feels strongly that sharing your hope and inspiration with families who are walking our journey can be a soul-shifting event for the newly diagnosed.  The "Book of Hope" will be provided in Sisters by Heart care packages and given to care centers across the country at no cost for distribution to newly diagnosed families.

We'd love to capture a few dozen incredible stories to include in the HLHS "Book of Hope."  To participate, please prepare a write up (250 word maximum) outlining your journey with HLHS.  Your story should reflect words of inspiration that you needed at diagnosis - reflecting that it is indeed not fair, but you will get through this and there are brighter days ahead. You can also supply a photo or artwork for the book.

No demographic data will be revealed in the Book of Hope. Your story will include you/your child's first name or patient name (for teen/adults). Patient ages will be included.

Empowered by Kids has worked with two other pediatric rare disease communities to create their Books of Hope, which can be viewed here:

Crohns Book of Hope

Cystic Fibrosis Book of Hope

If you'd like to inspire and create hope for others with your HLHS journey, please submit your write up, photo and/or artwork no later than January 31, 2015 to  Please note "Book of Hope Submittal" in the email subject line.  If we receive an overwhelming amount of submissions, Empowered by Kids and Sisters by Heart will select the entries utilized in the first edition of HLHS' Book of Hope.

We look forward to reading your stories.  Thank you for helping us touch as many families as possible.


Friday, October 10, 2014

Research Explained: Interstage Care and Mortality (surgical v. non-surgical sites)

Special thanks to Dr. David Schidlow for our fourth installment of...

The journal, Pediatric Cardiology, published a study in August, 2014: Site of Interstage Care, Resource Utilization, and Interstage Mortality: A Report from the NPC-QIC Registry.  This study was completed utilizing data from the National Pediatric Cardiology Quality Improvement Collaborative patient database.

The abstract can be found at the following link: 

What is the background of this study?

o Medical problems and early death remain a problem for children with hypoplastic left heart syndrome (HLHS) during the outpatient “interstage” period between the first (Norwood) and second (Glenn) operations.   

o The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) identifies differences in the care of interstage patients in the hopes of learning the best way to care for these children during this sensitive time.   

o One difference in care is the place where children receive interstage care.  Some are cared for at the surgical site (SS) that performed the Norwood operation.  Others are cared for at a non-surgical site (NSS), which could mean a hospital that does not perform the Norwood operation or a private cardiologist.  Among those who are followed at a NSS, the distance to the surgical site can vary greatly.

The aims of this study were to answer the following questions:  

o Where do HLHS patients receive their interstage care?  The surgical site (SS) that performed the Norwood operation, a non-surgical site (NSS), or at a combination? 

o How far is the NSS from the SS for those children who are followed at a NSS or at a combination of sites?  

o Are there differences in the number of medical problems or deaths associated with the site of interstage care and/or the distance from the surgical center?  

How was this study performed?  

o The researchers looked back at patients with HLHS entered into the NPC-QIC database over an approximately five-year period (July 2008 to February 2013).  The site of each patient’s interstage care was noted as (1) the SS that performed the Norwood procedure, (2) a NSS as described above, or (3) a combination.  The distance from the SS to NSS was identified for patients in categories 2 and 3.  The number of interstage medical problems, emergency department (ED) visits, readmissions to the hospital, and deaths were identified for each of the three groups.

What were the results of the research?

o Most patients (60%) received their interstage care at the SS.  The remaining patients received their care at a NSS (17%) or at a combination of sites (21%).    

o The patients who received interstage care at a NSS or at a combination of sites were followed at a variety of distances.  A large number (68%) of those patients were followed at a distance of 50 miles or greater from the surgical site.  The following figures are taken directly from the paper.

o Patients followed at the SS were more likely to have emergency room visits and readmissions.   Conversely, patients followed at a NSS or at a combination of sites were more likely to have problems identified with breathing and/or feeding.

o Despite these differences, there were no differences in the rates of death or in the reasons for death among the three groups.  Similarly, there was no difference in rates of death based on the SS-to-NSS distance.

o There were 66 patients, approximately 10% of the entire group, who unfortunately did not survive the interstage.  It was notable that among those 66 patients, 37 (55%) percent of them died in their home or in an emergency department.

What are the limitations to this study:

o There were several limitations to this study.  The main limitations related to the level of detail that was able to be ascertained about these patients.

o The NSS and combination categories were very broad.  As noted above,  they could be anything ranging from a large medical center that simply does not perform Norwood operations to the office of a single practitioner far from a medical center.  This study could not distinguish smaller differences between the two.

o The significance of more breathing and feeding problems identified at the NSS or combination is unclear.  It is not known if these patients truly had more problems, or if the fact that these problems were identified reflected more vigilance on the part of the caregivers.  Another limitation is that these categories are very broad.  Feeding and breathing problems could mean different things to different caregivers.  This lack of detail makes a refined analysis somewhat difficult.

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

o The site of interstage care does not seem to affect the likelihood of a patient passing away during the interstage period.   Similarly, the distance of interstage care from the SS that performed the Norwood does not seem to affect the rate of death.

o More ED visits and readmissions occurred in the SS group, and conversely, more feeding and breathing problems were identified in the NSS and combination groups.  As noted above, these differences did not seem to have an effect on death.  

o Finally, the mortality rate still remains high at approximately 10%, with many patients dying at home or in an emergency department.  This is an important reminder that we still have room to improve interstage care and decrease mortality.    

If you missed the first three installments of Research Explained, you can link to them here:


Tuesday, September 30, 2014

HLHS Collaborative: September's Action Period Call

After a two month hiatus for centers to regroup with their quality improvement teams, the Action Period calls resumed this week.  Discussion revolved around valuable work which continued over the summer months and important preparations for the Fall Learning Session.

The calls began with a review of data (mortaility and daily interstage weight gain) which is driving the current improvement work within the collaborative. Following data discussions, parent travel scholarships were announced to collaborative members, followed by an excellent discussion regarding how centers are funding parents to join them at the Learning Session. A number of centers identified local charities or non-profit groups that assisted in funding; others were able to emphasize to the powers that be the importance of parent involvement and secured funds through their hospital.  Happily, more and more hospitals are recognizing the value parents can provide and it is becoming much more commonplace to fund parent partners to attend the Learning Sessions.  

Advocate Children’s Hospital uses a combination of the above funding methods and selected parents who demonstrated commitment to their local group. If you're interested in the collaborative and quality improvement work, parents suggest you get involved with your local hospital - either on a parent advisory council, directly with your cardiac center's quality improvement team, or spark a conversation with your child's cardiologist experessing your interest in becoming more involved with NPC-QIC.

After a creative funding discussion, the call shifted toward the Transparency Workgroup.  The workgoup recommended to centers that the Collaborative begin sharing collective performance measures on the NPC-QIC website (these measures represent combined data from all the centers in the collaborative and do not represent any one center).   The workgroup brainstormed and created an  infographic to highlight the Collaborative's progress to date. Some of the data points included in the infographic are:  
  • number of patients in the registry
  • mortality rate (expressed as survival)
  • growth rates
  • readmission rates
  • parent engagement
  • who are collaborative members 

The Transparency Workgroup is excited to reveal the infographic (once beautified by graphic designers) in the coming weeks.  Stay Tuned!
September's Action Period call ended with a Learning Session preview and "homework" for cardiac teams prior to attending in November.  We'll just say, the Learning Session will be engaging - for both parents and clinicians - and a lot of good information will be shared and discussed. 

If you have the ability to attend the upcoming Learning Session in Cincinnati (November 7-8), we'd love to see you there.  To register for the Learning Session as a parent, please visit:

If you're not able to attend, keep an eye on social media where Sisters by Heart, parents, and clinicians will be updating on the events of each day!  Get Twitter updates using #NPCQICLS and Facebook updates at Sisters by Heart and HLHS Parent Advisory Page.


Friday, September 19, 2014

Research Explained: Sano vs. BT Shunt

Popularity of the National Pediatric Cardiology Quality Improvement Collaborative's (NPC-QIC) Research Explained is growing.  The third installment, brought to you by NPC-QIC's Research Committee, analyzed differences in the Sano and BT shunt used during the Norwood procedure - "Comparison of Shunt Types in the Norwood Procedure for Single-Ventricle Lesions", published in The New England Journal of Medicine in May 2010.

Our families often discuss this same subject, "Sano vs. BT" and are looking forward to your comments regarding this comparison.

Main Finding from this Study

While there has been great improvement in care for patients with hypoplastic left heart syndrome and other similar single ventricle lesions that require the Norwood procedure, these patients are still at great risk. When the Norwood procedure is performed there are 2 different ways blood can be supplied to the lungs. A right ventricular-to-pulmonary artery shunt (RVPAS) is placed directly from the right side of the heart to the pulmonary arteries by making a cut in the heart muscle. A modified Blalock-Taussig shunt (MBTS) is placed from an artery that supplies the head and arm to the pulmonary arteries. Each shunt has advantages and disadvantages. The MBTS may cause less blood to flow to the heart muscle through the coronary arteries, but the RVPAS may not allow the pulmonary arteries to grow well and makes a scar on the muscle of the heart. It was not known if one of these shunts were better than the other.

This study describes 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 in infants undergoing the Norwood procedure, survival without requiring a heart transplant was better at 1 year of age in those receiving a RVPAS than those receiving a MBTS.  

About this study

Why is this study important? 

This was a very important study because doctors at many different medical centers worked together to find answers to questions that could not be answered by one medical center alone. This is the first time that this type of study was successfully performed in congenital heart surgery, and has helped usher in a new era of cooperation between centers in doing research to improve outcomes in these patients. The number of patients at any single center would not be large enough to be certain that difference are not just based on random events or differences between individual patients, but rather based on an effect of one particular intervention or another.   Statistical calculations may be used to correct for individual differences, but can only be used when the groups of patients studied are large.  Many other studies have come from the information collected in this study because so many different medical centers worked together to contribute information. This study was also the first fair comparison between shunt types because patients were randomly assigned to a type of shunt.  This means that in such a large group, any difference seen between those with the two types of shunts is most likely due to the type of shunt.
In addition, this is a very large group of patients with this heart defect about whom we have a lot of very good baseline information.  It will be very valuable to continue to follow them over time, even for their entire lives. 

How was this study performed?   

This study enrolled patients from 2005-2008 who required the Norwood procedure at 15 medical centers in the United States and Canada. The patients were randomly assigned to one shunt type when they had their Norwood surgery. They were followed after surgery for 12 to 52 months depending on when they entered the study. The main comparison was how many from each group survived to 1 year of age without needing a heart transplant. In addition, they compared how many catheterization procedures each group underwent and the function of the hearts by echocardiogram (echo) for each group. 

What were the results of the research? 

o 275 patients with MBTS were compared to 274 patients with RVPAS.

o At 1 year of age the RVPAS had more patients alive without needing a heart transplant (74%) than the MBTS group (64%).  
  • When they followed the patients they could for longer than 1 year the difference between the groups disappeared.
  • At centers that did a lot of Norwood procedures every year there was no difference between shunt types even at 1 year.
o The group getting the RVPAS underwent more catheterization procedures than the MBTS group, mostly to perform interventions to increase the size of the pulmonary arteries.

o At the end of the study there was no difference between shunt groups in the function of their heart by echo. 
What are the limitations of this study?
This study went on for many years and patients were enrolled at different times so they were followed for different lengths of time. The main comparisons between groups were made when all patients were about 1 year old. This may not be long enough to know which shunt type is better.  Differences at 3 years were also examined and published recently1.  These data confirm that differences seen at 1 year did not continue. The number of patients alive without heart transplant was very similar between the two groups (67% for RVPAS vs. 61% for MBTS), even though cardiac function by echo was a little better in the MBTS group and those in the RVPAS group underwent more catheter procedures.  A further extension of this trial is ongoing to see what happens at 6 years old.

Differences in many features of patients might be studied, but deciding which are important (other than survival without heart transplant) is difficult.  As well, many differences in how patients are treated at different centers can be seen.  But since the patients were randomly sorted into groups for comparison based only on the type of shunt they received and not other aspects of care (such as using a certain medication), conclusions about other aspects of care would be very difficult.  
What are the takeaway messages considering the results and limitations of this study?
For the 1st year of life, survival without heart transplant is better in those who get a Norwood with RVPAS than those who get a MBTS. After that, there is not a clear advantage to have one shunt over another, but as they continue to collect more information over time, new knowledge may be gained. The group that had RVPAS had smaller pulmonary arteries and underwent more catheterization interventions to try to improve the size of their pulmonary arteries.  
1 Newburger JW, Sleeper LA, Frommelt PC, Pearson GD, Mahle WT, Chen S, Dunbar-Masterson C, Mital S, Williams IA, Ghanayem NS, Goldberg CS, Jacobs JP, Krawczeski CD, Lewis AB, Pasquali SK, Pizarro C, Gruber PJ, Atz AM, Khaikin S, Gaynor JW, Ohye RG; Pediatric Heart Network Investigators. Transplantation-free survival and interventions at 3 years in the single ventricle reconstruction trial. Circulation. 2014 May 20;129(20):2013-20.

Many thanks to NPC's Research Committee for continuing to assist parents in understanding research studies that relate to our children with HLHS.

NPC-QIC Research and Publications Committee 2014-2016

Jeff Anderson
, Chair, Cincinnati Children's Hospital Medical Center
Jean Ballweg, Le Bonheur Children's Hospital
Katie Bates, Children's Hospital of Philadelphia
Michael Bingler, Children's Mercy Hospitals and Clinics-Kansas City
Clifford Cua, Nationwide Children's Hospital
Nancy Halnon, Mattel Children's Hospital UCLA
Garick Hill, Children's Hospital Wisconsin
Colleen Melchiorre, Parent
Patrick O'Leary, Mayo Clinic
Sarah Ortiz, Parent
Matt Oster, Children's Healthcare of Atlanta
David Schidlow, Boston Children's Hospital
Julie Slicker, Children's Hospital Wisconsin
Karen Uzark, University of Michigan Congenital Heart Center


Tuesday, August 26, 2014

Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Registration for the NPC-QIC 2014 Fall Learning Session is now open! Sisters by Heart and NPC-QIC want to send YOU to the Fall Learning Session November 7-8, 2014! Together, Sisters by Heart and NPC-QIC  are offering parent travel scholarships, valued at $500 each, to three 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 a little 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) during the "interstage" period between discharge from their initial open heart surgery- Stage 1 Norwood - and admission for a Stage 2 biredirectional Glenn procedure. Fifty-five (55) centers from across the country have come together with parents to improve the care for HLHS babies.

Ask any parent who has attended a NPC-QIC learning session about their experience and their reaction will be the same; it is life changing. Natasha Sawyer, Sisters by Heart board member, shared her experience on her personal blog after attending her first learning session in January of 2013:

“The conference was more than I could have ever imagined it would be. I'm not sure what I expected, but it definitely wasn't this. Teams consisting of cardiologists, nurse practitioners, nurses, dieticians, therapists, social workers, and parents filled a large conference room and the excitement began. Over 100 people were in attendance, including 15 parents, representing centers from across the country. From the moment I walked in, I felt welcomed. I felt important. Doctors and team members expressed how thrilled they were to see so many parents in attendance and how crucial we are to the success of the collaborative.

Before the conference, I did not fully comprehend how amazing pediatric cardiologists and their team members are. Sure, I knew it took a special kind of person to work with babies and children with life-threatening heart defects, but until this weekend, I did not see it as more than just their "job". Please bare with me for a few minutes, I am still on an "emotional high" from the past two days and I am desperately trying not to jump up and down and shout for joy while I try my best to describe what I witnessed.. The members of the NPC-QIC have more passion for saving Hypoplastic Left Heart Syndrome babies than you can even begin to imagine. They are not satisfied with their current programs. They are not satisfied with the percentage of babies surviving from the first to second surgery, even though just 30 years ago these babies were being sent home to die. They are spending so much time and energy going above and beyond what is expected of them to change the future of children born like my son. They are changing the quality of life for these kids- kids and families they have yet to meet and have no tie to! I used to think Cardiologists were keeping their ideas to themselves, not wanting to share their "trade secrets" with anyone else. This weekend, I saw how open every team was to sharing their "secrets" with their colleagues. I watched cardiologists and team members from different centers take notes as another shared what is working for their center.

This weekend, I saw not only passion for caring for HLHS kids, but a fire to continue to make advancements and improvements for these children. I am so humbled by this experience, and feel forever indebted to these physicians and care team members who are helping our children continue to defy the odds. I cannot wait to share everything I have learned with my team's collaborative coordinator.” Natasha Sawyer, HLHS Mom,

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.

Sisters by Heart will be accepting travel scholarship entries until September 1, 2014. 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
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 September 8, 2014. 

Please make sure to register for the event using the following link if you will be attending the Fall Learning Session!

We look forward to seeing you in Cincinnati in November!


Friday, August 22, 2014

Research Explained: Can the Left Ventricle Be Taught to Grow?

We're excited to share with the HLHS community, a second installment of "Research Explained" courtesy of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC).  NPC-QIC's Research and Publication Committee reviewed a study published in November of 2012 - a subject we've covered previously - on Boston Children's Staged Left Ventricular Recruitment (SLVR) for borderline HLHS patients. 

We know many of you are interested in reading more about the SLVR program, and some of our Sisters by Heart families have and are currently undergoing SLVR in Boston. 

Special thanks to Colleen Melchiorre (Mom to Paul, HLHS) and Dr. David Schidlow for their dedication in bringing us the following "Research Explained."

The Journal of the American College of Cardiology published a study in November 2012:  “Staged Left Ventricular Recruitment after Single-Ventricle Palliation in Patients with Borderline Left Heart Hypoplasia.”

The abstract can be found at the following link:

The NPC-QIC Research and Publication Committee reviewed this article, and a summary of the findings can be found below.

Main Finding from this Study:
Most children with hypoplastic left heart syndrome (HLHS) require three surgeries in the beginning of their lives for survival: the Norwood, Glenn and Fontan surgeries.  This result of these surgeries is a heart that only has one pumping chamber (instead of the usual two chambers). For children with HLHS, the right ventricle pumps blood to the body.  The process of these surgeries all together is called “single-ventricle palliation”, or SVP.  (SVP is the term used in the article, but it might be more familiar to many readers as the “Fontan route”.)

SVP is recommended for most children with HLHS.  This is because the left ventricle is too small to help pump blood to the body.  In some children, however, the left ventricle is “borderline”, meaning that it might, with the help of multiple surgeries and other procedures designed to promote growth, be able to do the work of pumping blood to the body. 
The authors of this paper describe an approach at Boston Children’s Hospital for children with borderline hearts.  They show that for certain patients, it is possible to get the left ventricle to grow using a combination of different surgeries and other procedures.   Some of the patients who undergo these surgeries and procedures are able to have a “biventricular” circulation, meaning the left ventricle pumps blood only to the body and the right ventricle pumps blood only to the lungs.  This is more similar to a healthy normal heart.  Perhaps more importantly, this demonstrates that there is the potential for growth of the left ventricle in patients with borderline left heart structures.

About this study:
Why is this study important?

Many children with HLHS who undergo SVP do well.  Unfortunately, however, many babies and children do not survive SVP and others have medical problems related to the heart and other organs. This has prompted investigators to explore the possibility of getting the left ventricle to grow in the hope of keeping the left ventricle as the chamber that pumps to the body (this is called a biventricular circulation). These children could (we don’t know yet) have better survival and fewer medical problems than those that undergo SVP.

The authors of this paper describe ways of getting the left ventricle to grow; they call this “staged left-ventricular recruitment”, or SLVR.  SLVR procedures include surgeries and catheter-based procedures designed to promote blood flow through the left side of the heart.  This includes procedures on the mitral valve, the aortic valve, and within the left ventricle itself. These are all components of the heart that are affected by HLHS, and patients must meet certain qualifications of these components to be a candidate for SLVR.

How was this study performed? 

The researchers looked back at patients diagnosed with borderline heart at Boston Children’s Hospital between 1995 and 2010.  They compared 34 patients with borderline hearts who underwent traditional SVP, and 34 patients who underwent SLVR.    They compared the sizes of different left-sided heart structures.  Specifically, they compared the size of the mitral valve, aortic valve, and left ventricle. 

What were the results of the research?

o   At birth, the sizes of left heart structures were similar in both groups of patients, although the patients in the SLVR group tended to have a slightly larger left ventricle, and patients in the SLVR group were more likely to have had a procedure as a fetus (during the pregnancy) or shortly after birth to open a blocked aortic valve. 

o   Patients in the SLVR group did demonstrate growth in their left-sided heart structures.  Specifically, they had a larger mitral valve, aortic valve, and left ventricle than patients who had SVP.  The most growth was seen after the Glenn surgery.

o   12 of the 34 patients in the SLVR group were able to achieve a biventricular circulation.  18 of the patients had either Glenn or Fontan type hearts, and 1 underwent transplant.  Those with Glenn or Fontan circulation will either continue with SLVR or undergo SVP.

o   Patients who had a traditional SVP typically had 3 surgeries, whereas patients who underwent SLVR typically had 4 surgeries. 

o   Patients who had a small hole created in the top heart chambers to direct blood flow into the left ventricle were more likely to have growth of left-sided heart structures. 

o   There were 3 deaths (8%) in the SLVR group and 7 deaths (20%) in the SVP group.  Although this difference was noted, the number of patients in the study overall was too small to know if that difference was due to the way they were treated. 

What are the limitations of this study?

o   The study looked at a small numbers of patients.  This limits the ability to draw conclusions that can be applied to the general population.  Borderline patients encompass a wide range of patients with many different sizes of the left side of the heart. 

o   There may be aspects of the hearts in the SLVR that are different from the SVP group.  Patients in the SLVR group were more likely to have a procedure as a fetus or newborn to relieve blockage of the aortic valve.  This may mean that there are differences between the two groups despite the size of their left hearts being similar.

o   This study does not describe how the SVP and SLVR patients are doing clinically, either in the short or long term.  

o   Important questions that could be addressed in the future include:  

 §  What does the future hold for promoting the left side of the heart to grow?

 §  How are SLVR patients doing clinically, and what are their long-term outcomes? How do they compare to the SVP patients? 

 §  When is the best time to undergo SLVR?

What are the takeaway messages considering the results and limitations of this study?
o   This study shows promise for promoting growth of the left ventricle in patients with a borderline heart.  Future study is required to explore the best way to achieve that growth, but this study offers hope. 

o   In order to undergo SLVR, children must meet certain qualifications. It is important to realize that SVP is recommended for the most children with HLHS.  In a select group of patients with HLHS—those with a borderline heart—surgeries and other procedures to encourage the left heart structures to grow are possible.  Among such patients, some, but not all, will achieve a biventricular circulation.   

o   SLVR includes a variety of surgeries and catheter-based procedures on different parts of the left heart (the mitral valve, aortic valve, and ventricle), and most patients who undergo SLVR will have a Norwood and Glenn procedure prior to achieving a biventricular circulation. 

o   Compared with patients who undergo SVP, patients who undergo SLVR have larger left heart structures, and 12 out of 34 patients who underwent SLVR were able to achieve a biventricular circulation.     

o   More studies are required to understand the best way to promote left heart growth and to understand the short and long-term quality of life for patients with biventricular circulation.

The Bottom Line:

Doctors at Boston Children’s Hospital are working to grow the left side of the heart for some children with HLHS. These procedures are still being studied, but they seem to help the left heart grow for some children. In order for your child to qualify, he or she must meet certain criteria.   You may wish to talk to your cardiologist about SLVR, and whether your child may be right for it.  Dr. Emani (the author of the article reviewed here) can also be contacted at


Monday, August 18, 2014

CHD Kids and School Special Services

Summer is almost over and many HLHS children are headed to school - for the first time or as returning students. Trent Hamilton, HLHS dad and Middle School Principal, generously shared his wealth of information with Sisters by Heart on educational benefits and services for CHD children in the public school system. Thank you, Trent, for sharing this information with our families! 

Several people in our CHD support group have recently had questions about getting special services for the kids who are starting school this year. Specifically, we have been discussing the differences between Special Education services through the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 (Section 504), and which would be appropriate for their CHD child. As a school principal, I deal with both Section 504 and IDEA students on a daily basis. I hope that the following blog will help you make the right decisions to provide assistance and protection to your CHD child as they start the new school year.

Basically, the two laws are similar in that they both provide educational benefits to kids with disabilities, but they differ in their eligibility requirements and the types of benefits that are provided. The requirements for eligibility under IDEA are stricter than those under Section 504, but IDEA provides more benefits than does Section 504. Essentially, all students under IDEA are also protected under Section 504, but not all students under Section 504 are protected by IDEA. It is easier to place a student under Section 504 because it has less procedural criteria, but these students are generally provided less assistance and monitoring by the school. IDEA status is more difficult to get because there are more specific criteria and it has much stricter regulation, but it does provide more types and degrees of assistance and special services to the student. Section 504 protects people for their lifespan in many areas, including school, employment, and transportation, while IDEA only addresses the special education of students from ages 3 to 21.

Students are eligible for IDEA if they have a specific impairment or condition that adversely affects their educational performance. These impairments/conditions can include, but are not limited to: autism, learning disabilities, speech/hearing impairments, emotional disturbance, or other health impairments, but the condition MUST adversely affect their education. Students are eligible for Section 504 if they have a condition that substantially limits a major life activity, even if the condition does not affect their education. Major life activities include: walking, seeing, speaking, breathing, learning, and working. But Section 504 conditions do NOT have to have an educational affect.

IDEA requires that students be placed in the most appropriate learning environment for them individually. This can include regular or special education classes. It also requires that each student has an individualized education program (IEP), which provides specific modifications and accommodations to help the student succeed academically. Section 504 generally places students in a setting that is comparable to that of students who are not disabled. It also provides some accommodations, but these are usually used in the regular educational setting.

So, which type of services is right for your child? This depends on the level that your child’s CHD has affected them and their development. If your child’s CHD caused them to have any type of developmental or learning disability, then IDEA is probably the right program. If your child’s CHD slows them down physically, but has not affected their learning or development, then Section 504 is probably best. There are obviously exceptions to these, so be sure to consult your child’s school if you aren’t sure which is right for you.

You might be wondering why you need any type of service at all if your child doesn’t have any learning or developmental issues. As a principal and a CHD parent, I highly recommend that you pursue some sort of protection for your child at school. While your child may not need accommodations or special services in order to succeed academically, they may need some of the other protections that are provided under Section 504. One of these protections involves attendance. Many states require that students attend 90% of the available school days and, even if an absence is for approved medical reasons, a student can be retained for excessive absences. If a student has protection under Section 504, special accommodations can be made in the event of an extended illness or hospitalization. Also, your child may not experience severe educational deficits early in their school years, but if they do later in life, having a 504 plan can make it easier to get accommodations or even move to IDEA protection. Section 504 also makes it easier to get certain exemptions from activities, like running, lifting weights, etc. In addition to all of this, the Section 504 plan follows your child through school as a record and every new teacher is required to review it during the school year. This means that each new teacher will be notified of your child’s condition and know what your child needs.

I hope that this information helps you in making the right educational decisions for your CHD child. If you still have questions, I encourage you to speak to your school’s counselor or special education diagnostician. Again, your CHD child does not have to have either one of these services, but I assure you that my son (HLHS) will, at least, have a Section 504 plan.

Trent Hamilton

Heart Dad & Middle School Principal