Making sense of congenital heart surgery data

The Pediatric Congenital Heart Association is committed to empowering patients and families. Patients and families deserve essential information to help make important health care decisions. As this data becomes available it can be very hard to understand.  It is our hope that this resource can help.  For a .pdf version of this document, click here.

When your child has congenital heart disease, at times it can feel like there are so many decisions to make, especially, when faced with surgery or another medical procedure.  During these times of stress, it is important to partner with your child’s medical team.

One key decision you may be thinking about is where your child receives care. More and more information about different hospitals is now available to the public for you to review.  However, understanding this information can be a challenge.

Much of the information to look at includes several different numbers.  Our goal is to describe what some of these numbers mean, offer things to think about when reviewing this information, and encourage you to use publicly available data as “one piece of the puzzle” when making health care decisions.

Above all, please use this information in a conversation with your child’s medical team when making important decisions.

 

A little bit of background

Understanding congenital heart surgery information that is available to the public can be very complicated, even for people who work with the numbers all the time.  We realize you may find that some of this information is difficult to understand.  It is important information and we encourage you to talk with your child’s medical team to help you.

Here, we are going to focus on explaining one specific set of information reported by the Society of Thoracic Surgeons (STS). Of all programs involved in reporting congenital heart surgery information to the public, the STS program is currently the largest.  The information from the STS is also used by other groups who report congenital heart surgery data to the public, including Consumer Reports and US News & World Report.

The STS routinely collects multiple pieces of information about congenital heart surgery to form a database.  This information is often called “data” and includes a variety of different numbers along with other information.

Approximately 120 hospitals around the country who perform congenital heart surgery provide information to the STS database. In 2015, the STS began sharing some of this information on their website for those hospitals that agreed to share their information with the public.

The reporting website can be found at:  http://publicreporting.sts.org/chsd.  This information is updated once a year.  Details from the STS about the information contained on the website can be found here.

 

The STS data

The STS reporting website lists several pieces of information for each hospital participating in public reporting. As you read on, we’ve tried to help you understand what some of the words and numbers mean that you will find on the website. Some of this information may be easy to recognize and understand.  Some of it is more complicated.

In addition to the information below, we have also developed an appendix that can be used with this guide that may provide additional helpful information.

 

Surgeons

The name of each surgeon at the hospital who performs congenital heart surgery was listed on previous versions of the STS website, but is not listed in the current version.  There is a link to the hospital’s website where you may find some of this information.  You may also want to inquire about the surgeon’s board certification and level of experience.  In addition, it is important to remember that the care of patients with congenital heart disease involves multiple team members working together including the surgeon. You can use our guided questions tool as a reference for other questions you may want to ask about the care team.

 

Outcomes

Outcome means the result of the surgery.  For each hospital, information is displayed on deaths after surgery.  These include all deaths that occur during the hospitalization in which the surgery is performed, or death that occurs in any location within 30 days of surgery. All deaths are included – the cause doesn’t matter. Each hospital uses the same criteria, which means they cannot pick and choose which deaths to report.  The STS periodically checks the information to make sure they are not missing any deaths; about 10% of the hospitals participating in the STS Congenital Heart Surgery Database are randomly selected each year to have their data checked or audited.

The STS is also working on developing methods to report other types of important outcomes such as complications after surgery, and the number of days a child stays in the hospital after surgery.

 

Timeframe

The information is gathered about all surgeries that took place at a hospital during a span of the last four years.  Although you may want to see only the most recent numbers, like over the past month or past year, this can have some downsides. Because only a small number of surgeries may be performed over a short period of time by any one hospital, comparing these small numbers may make it seem like there are no real differences. Research studies have shown that putting the numbers together into 4-year timeframes gives the best chance that any differences will become easier to see.

You may want to ask whether the hospital you are considering has had any major changes recently (like changes in surgeons, cardiologists, the unit patients are treated in, etc.), and if so, work with your child’s healthcare provider to understand some of their most recent data.

 

Data Presentation

The information is presented in two ways on the website:

  1. Overall: Overall numbers for all of the congenital heart surgeries.
  2. Separate STAT Categories:  Separated into categories of surgeries as described below.

 

STAT categories

It would be great if the outcome information we are talking about were reported for each specific heart defect or type of surgery, but this can be challenging.  Because there are so many kinds of heart defects, a hospital may not see many of the exact same type of defects in a given year. These small numbers can be hard to understand or compare as described in the section above.  Combining operations together into larger groups or categories (the STAT categories) can help.

To help organize surgeries into categories based on how risky or complex they are, the STS places each surgery type into one of five “STAT” categories. Category 1 includes surgeries with the lowest risk of death, and category 5 includes the surgeries with the highest risk of death. STAT is short for:  Society of Thoracic Surgeons – European Association for Cardio-Thoracic Surgery. These categories were created after looking at 77,294 heart surgeries across North America and Europe.

A brief listing of common types of surgeries included in each STAT category is included in the table below.  More detail can be found in this article:  O’Brien SM, Clarke DR, Jacobs JP, Jacobs ML, et al. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thorac Cardiovasc Surg. 2009;138:1139-53.

 

Common types of surgery within each STAT Category
STAT Category 1 atrial septal defect repair, ventricular septal defect repair, coarctation repair, subaortic stenosis resection, pulmonary valve replacement, conduit replacement
STAT Category 2 Tetralogy of Fallot repair, Fontan operation, Ross operation
STAT Category 3 Hemi-fontan operation, arterial switch operation, complete atrioventricular septal defect repair
STAT Category 4 aortic arch repair, arterial switch operation with ventricular septal defect closure, heart transplant, aorto-pulmonary shunt, total anomalous pulmonary venous return repair, truncus arteriosus repair
STAT Category 5 Norwood (stage I) operation, hybrid stage 1 procedure, double switch operation, truncus arteriosus with interrupted aortic arch repair

 

Mortality Data

Let’s take a look at how the information about death (mortality) is displayed on the STS website:

#/Eligible and Observed:

The first column of numbers on the website shows the following numbers for each hospital:

# – total number of deaths during the 4-year timeframe.

Eligible – total number of surgeries performed during the same timeframe.

This number is particularly important because it tells us the volume or number of surgeries the hospital performs.  See below and the appendix for more information about how to understand this information and why the volume of surgeries a hospital performs is an important piece of information to consider in addition to the number of deaths or mortalities.

Observed – the rate of death calculated by dividing the two numbers above:  the number of deaths divided by the total number of eligible surgeries.

Even though the numbers in this calculation are pretty easy to understand, they should not be used to label the quality of a congenital heart hospital. This is because the types of congenital heart disease and surgeries performed, along with important characteristics of the patients (such as whether they were born prematurely or have some type of genetic syndrome or other medical problem besides their heart disease) can be very different across hospitals. Some hospitals treat a lot of patients with very complex or severe heart disease and other conditions, while other hospitals treat fewer of these patients.  This is known as having a different “case mix”. If you compared only the simple calculations above, some hospitals could have a higher rate of death just because they take care of more complicated and complex patients, not because they are providing lower quality or worse care.

So, in order to better understand how a hospital is doing, more advanced methods are necessary.

 

Expected: 

This column lists the expected rate of death.

This number is calculated from a math formula that is used to predict how many deaths we could expect to see at a hospital when taking into account the severity or complexity of patients they treat. This formula uses information like the type and complexity of the congenital heart surgery performed, and the characteristics of the patient such as how old they are, how much they weigh at the time of surgery, whether the patient has a genetic syndrome or other medical problems, etc.

Importantly, hospitals don’t get to pick their own expected rate, it is assigned for all hospitals based on the information in the math formula created by STS.

The formula is not perfect. It does not take into account every important factor that relates to how complex or sick a child may be at the time of surgery, but it is the best one that has been developed to date and it has been improved and updated over time.

 

O/E (95% CI):

This column lists what is known as an observed/expected (O/E) ratio and a 95% confidence interval.

Observed/Expected (O/E) ratio – This ratio is calculated by using the data described above, and dividing the number of observed or actual deaths at the hospital by the number of expected deaths from the math formula (based on how complex or sick the patients at that hospital are).

If the O/E is 1 – A ratio of 1 means the hospital has a similar number of deaths to what would be expected for the type and complexity of patients that they treat (their case mix)

If the O/E is less than 1 – A ratio less than 1 means the hospital had fewer deaths than what would be expected for the type and complexity of the patients that they treat. Thus, a lower O/E ratio is better.

If the O/E is greater than 1 – A ratio greater than 1 means a hospital has more deaths than what would be expected for the type and complexity of the patients that they treat.

95% Confidence Interval (95%) – The O/E ratio is displayed with what is known as a 95% confidence interval, which is very important. The calculations from the math formulas described above are complicated, and it is difficult to be completely certain about what the exact O/E ratio is. The confidence interval shows the range of numbers where the O/E ratio could fall for each hospital. This range is just as important as the O/E value itself.  Taken together, the O/E ratio and 95% confidence interval is believed to be one of the most important pieces of information displayed on the website.

 

Adj. Rate (95% CI):

This piece of information can be challenging to interpret.  It represents the adjusted mortality rate with 95% confidence interval.  It is calculated from a math equation using some of the information described in more detail above.  It represents what the hospital’s rate of death would be if their results were in theory applied across the entire population of patients within the STS Congenital Heart Surgery Database.

 

Star rating

In an effort to help make it easier to understand the information we’ve been talking about, STS has given each hospital a star rating ranging from one to three stars. This rating is based on the O/E ratio and 95% confidence interval.

One star = More deaths than expected.  These hospitals have more deaths than would be expected based on the type and complexity of patients they treat (their case mix).  Their O/E ratio and entire 95% confidence interval are greater than 1.

Two star = Deaths similar to expected. These hospitals have a rate of death similar to what would be expected based for the type and complexity of patients they treat. Their O/E and 95% confidence interval overlaps with 1.

Three star = Fewer deaths than expected.  These hospitals have fewer deaths than would be expected for the type and complexity of patients they treat. Their O/E ratio and entire 95% confidence interval are less than 1.

Example –

Star rating                   Example of O/E ratio (95% CI)

1 star                                       1.4 (1.1 – 1.6)

2 star                                       0.8 (0.7 – 1.1)

3 star                                       0.6 (0.5 – 0.9)

 

It is important to note that based on the definitions of the star categories described above and the way the math formulas work, the vast majority of hospitals fall into the two star category. This is talked about in more detail below.

 

What does all of this mean?

This information can be hard for families and even providers to understand. There are a few key points to be aware of:

  • Not all hospitals share their data. Of the hospitals currently participating in the STS Congenital Heart Surgery Database, about half currently agree to share their information on the STS public reporting site (see the appendix for more details). If you are considering a hospital that does not report their information you should ask them why. They likely still send their data to the STS Database, but have decided to not share it publicly. You can work with your child’s medical team to ask for the same information that would be posted to the STS website.

 

  • Remember the timeframe of reporting. As described above, there are several reasons why the 4-year timeframe for reporting the information was chosen. You may want to ask whether the hospital you are considering has had any major changes recently, and if so, work with your child’s healthcare provider to understand some of their most recent data.

 

  • Not all outcomes are reported. Current public reporting efforts focus on mortality (death) that occurs in the short-term after surgery. Efforts are ongoing to develop the methods necessary to share information on complications that occur after surgery, number of days in the hospital, and other longer-term outcomes. In the meantime, you should talk about other outcomes that are important to you with your child’s healthcare team and work with them to understand any available information.

 

  • The raw numbers may be easier to understand but they SHOULD NOT be used to judge the quality of a congenital heart hospital. The raw data (#/Eligible and Observed) do not consider the severity or complexity of patients the hospital treats. Some hospitals may have higher mortality rates simply because they take care of sicker or more complex children.

 

  • Use the information that takes into account the type and complexity of patients the hospital treats. The additional information calculated from the math formulas described above is much better to use in understanding how a hospital is performing compared to what would be expected for the type and complexity of patients that they treat. The math formulas allow the calculation of the O/E ratios and star ratings.

 

  • Look beyond the star ratings. There are a few things to know about the star ratings calculated from the math formulas:

Small changes can influence a hospital’s star rating. Any time you group hospitals into categories, a few more or less deaths can cause the hospital to change from one category or group to another. The same is true for the star rating system.  For example, in one reporting period a hospital had an observed mortality rate of 3.7% with an O/E ratio of 0.84 (95% confidence interval 0.66-1.05) resulting in classification as a 2-star center. The year prior, the observed mortality rate was 3.8% with an O/E ratio of 0.8 (95% confidence interval 0.6-0.9) resulting in classification as a 3-star center.

The majority of hospitals are classified in the 2-star category. Because of the way the math formulas used to calculate the star rating work, the majority of hospitals are classified within the 2-star category. There may be important differences between some of these hospitals that you don’t see when you look only at the star ratings.

Use the more detailed information on the STS website. Due to the reasons above it is important to look beyond the star rating to more of the detailed information presented on the STS website. Remember that lower O/E ratios are better, but also that small differences in the O/E ratios themselves may not be important. The confidence intervals around the O/E ratio are just as important to consider because they describe the range of values where the O/E ratio is likely to fall.

 

  • The information on the website can’t necessarily be used to directly compare two hospitals without knowing more of the story. This point is critical to understand.  The math formulas used to calculate the information such as the O/E ratio and star ratings tell us how a hospital is performing compared to what would be expected specifically for the type and complexity of patients they treat (case mix).

 

For example, a hospital can receive a 3-star rating by doing well in caring for a high-complexity patient population (very sick/complex patients), doing well in caring for a low-complexity patient population, or somewhere in between.

A hospital who does well in treating lower complexity patients can’t really be directly compared to a hospital who treats higher complexity patients (sicker or more complex children). It can’t be assumed that this first hospital would have the same success if they were treating the more complex or sicker patients that the second hospital treats.

For this reason, it is important to understand not just the information about the outcomes (the O/E ratios, star ratings, etc.) but also the type and complexity of the patients that the hospital treats in order to make the best judgement.

This is really important especially when deciding where to seek care for a child with more complex heart disease. In this situation, you may want to understand not only which hospitals have good results but whether they achieved these results through taking care of a high complexity patient population. 

 

  • Understanding the type and complexity of patients a hospital treats. So how do you understand this important piece of the information – the type of patients that a hospital treats? There is no “gold standard” or best way to do this that has been looked at in any research studies to date, and it can be challenging to understand based on the data currently presented on the website.  Here is one way to begin to understand this information:

You can look at the number or volume of patients a hospital treats in the high complexity or high risk STAT categories (STAT categories 4 and 5). Remember this information is found under the “Eligible” column described above. A higher number means the hospital treats more of these types of cases.  You can also understand a hospital’s results or mortality information (O/E ratio and 95% confidence interval) specifically for these higher complexity operations by looking at the information presented in these rows of the table for each hospital on the STS website.

 

In addition to helping to put the information above, such as star ratings, in better context, it is also important to note that prior research studies have shown that in general that hospitals that perform a higher number of operations generally have better results, particularly for children who have higher complexity types of heart disease. This is known as the “volume-outcome” relationship.

 

  • More information, including the range of values from hospitals currently reporting on the STS website, can be found in the appendix.

 

How can I use this data?

Publicly reported information can be a useful tool when making health care decisions. However, it is important to remember that the information shared, as well as this guide, cannot by itself tell families where they should seek care for their child.

There are often many things that impact a family’s healthcare decisions and this information is best used as just one tool to help to make those decisions.

We recommend reviewing the publicly reported STS data and the key points included in this guide with your child’s healthcare team as a first step.  Don’t be afraid to ask questions until you understand how this information impacts your child.

For more information, visit www.conqueringchd.org.

 

Authors:

Sara K. Pasquali MD MHS1, Jeffrey P. Jacobs MD2, Michael Kim PhD3, Amy Basken MS4

1 University of Michigan, C.S. Mott Children’s Hospital, PCHA Medical Advisory Board, 2 Johns Hopkins University, Johns Hopkins All Children’s Hospital, PCHA Medical Advisory Board, 3 Parent, PCHA Steering Committee, 4 Parent, PCHA Director of Programs

Acknowledgements:

PCHA would also like to thank editors David Kasnicand Nicolas Madsen MD MPH2

1Parent, PCHA Executive Director; 2Cincinnati Children’s Hospital and Medical Center, PCHA Medical Advisory Board Vice-Chair

 

School Intervention Series: A Complete Resource Guide

PCHA welcomes back Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin School for part 2 of her 3 part series about School Intervention. If you missed her first post, you can find it here. Today, we re-share Kyle’s wealth of information on navigating a school’s system without a dedicated school liaison. Her complete resource list is included at the end of this post for easy reference. 

Going back to school after a diagnosis or hospitalization can be scary for everyone! Families might worry about how their child will transition, schools might worry about how they will care for the child, and children might worry about what to say and how to act around friends they haven’t seen in a while (just to name a few examples). Each and every one of these concerns is valid and understandable. So, how do we swing that pendulum of emotion from feeling anxious to feeling prepared? I like to think of it as a 3-step process: proactive planning, clear communication, and seeking appropriate supports. The goal for this second part of my series is to give you a variety of resources, tips, tricks, and recommendations to successfully accomplish all three.

Proactive Planning

School is one of the best distractions a child can have! School provides a predictable structure with scheduled events, activities, responsibilities, and expectations. These are all things that will greatly benefit children who have experienced significant unpredictability in their lives. Yet, we know that return to routine can be overwhelming at times. The Center for Children with Special Needs and Seattle Children’s partnered up to create a great checklist for planning your child’s return to school. You can find that checklist here.

When I meet with families who are preparing for a new school year I always share two “Back-to-School” information sheets. Battling the Back-to-School Butterflies helps families plan for the big day by suggesting some tips for easing back into a school routine and Back-to-School To Do’s is a list of compiled questions to ask yourself while planning for an organized transition back to school. Thinking points, if you will!

Attendance is another major topic that comes up when I am working with families on school re-integration. We all know that children with chronic illness (regardless of the type) miss school more frequently than their healthy peers. Since the attendance patterns children form in school are closely linked to their ability to successfully maintain a job as an adult, I always stress attempting to make medical appointments before or after school, and if this is not possible, to work with your child’s teacher to find a time where the least core curriculum will be missed. Remember, missing a class period does not just mean you are missing the information covered in the textbook, it also means you are missing explanations, examples, peer questions, opportunities to practice and share reasoning’s, etc. – things that cannot be replicated when completing the make-up assignment at home. Proactive Planning for Necessary Absences is the info sheet that I often share with families as they create a plan that seeks to accommodate both a busy appointment schedule and optimum school attendance. It won’t always work out perfectly and that’s OK – your child’s health comes first! I just want it to be something that’s considered along the way.

Clear and Consistent Communication

Sharing information about your child’s medical history, current medical status, or potential medical challenges in the future can be really hard and often emotional. Schools understand that. They don’t want to know all of your child’s medical history to be nosey; they need to know it so they can ensure they are providing the best and safest care. It is within those uncomfortable conversations that trusting relationships are built – it’s OK to be vulnerable and it’s OK to not know all the answers. Use this opportunity to work together to find them. Ten Tips for Caregivers is an excellent starting point for quick tips on creating those meaningful partnerships with your child’s teacher/school.

Next, I encourage every family I work with to create some form of Getting to Know Me document to be given to teachers, administrators, coaches, substitutes … any staff who works with your child. Once again, I found one that I love while searching the Center for Children with Special Needs website (www.cshcn.org). This Getting To Know Me template highlights the child’s interests and strengths before getting into medical diagnosis and current health status. That’s how it should be – after all, were talking about a child!

In addition to informing all teachers and school staff, I also encouraging the sharing of basic information with the families of classroom peers. The purpose of sending out a class letter (much like one you would receive if a child in the classroom had a peanut allergy) is to make sure classmates are washing their hands regularly, cleaning their shared and personal spaces frequently, and either staying home or communicating when they are sick. The class letter is the most frequently requested of all the resources I share with patient families. As you’ll see from my sample letter, I encourage including vaccination information on the opposite side for any family that may be overdue for or on the fence about getting vaccinated. Please personalize it using your preferred wording and share it with your child’s teacher … it could mean far fewer germs spreading through the classroom each year.

Bullying is also a topic that comes up over and over again with the patients I see. Bullying is something I take very seriously and prioritize whenever possible, however often times when I investigate these concerns the findings are split. Sometimes true bullying is taking place and we need to put an intervention plan into action immediately. Other times (more often than not), we are finding that children’s with chronic illnesses who’ve experienced long hospital stays and constant one-on-one attention from adults, tend to have a hard time re-integrating into environments that follow expectations of sharing, turn-taking, and delayed gratification. In many of the cases I’ve reviewed, the intervention that we ultimately put into place, is re-learning appropriate group social skills and accepting that each day moments of success (where we get what we want) and disappointment (moments where we do not) and learning how to appropriately communicate the feelings associate with both. Parents Act Now is a great starting point for understanding what bullying is and how to begin a conversation with your child’s school to ensure that all students feel safe and respected at all times.

The Power of Effective Support Services

I urge families to stay aware of normal developmental guidelines and corresponding developmental milestones. I am a firm believer that all children develop differently and at their own pace, however I also know that neurodevelopmental differences due to medical diagnoses, repairs, and treatments can appear at many different times. There is no academic, social, or emotional delay that cannot be accommodated for, however, it first must be identified. I highly urge you to seek some sort of neurodevelopmental follow-up evaluation from your medical provider if you do begin noticing a developmental difference or delay. The National Association of School Psychologists published a great brief guide to understanding and identifying disabilities. You can find that here. Remember, the earlier you seek necessary support, the better the chances of a positive outcome.

When it comes to establishing support services in school, one thing that I get asked all of the time is, “Who’s responsibility is it?” It doesn’t matter the illness at hand, the child’s current status, or even the rest of the question. The answer is always, “It’s everybody’s responsibility.” I often use a guide for families, schools, and students that breaks down individual responsibilities nicely. You can find that info sheet here. Almost every patient we see has some sort of special education service in place, or qualifies for one. My families often come to me with several questions regarding what services are available for their child and how they go about getting some sort of help in place. Special education support accounts for 24% of my current school interventions – nearly a quarter of the families I work with. To make it easier, I’ve created explanations about the three major services that are offered in schools: a Response to Intervention (RtI) Plan, a 504 Plan, and anIndividualized Education Plan (IEP). Click on each link to learn more about what each program offers and the criteria to qualify for that service. Click here to see a useful graphic for deciding which service best fits your child’s needs. There is one main thing that every parent must know and be prepared to challenge: a school can never refuse or delay a parent’s request for a special education evaluation (“it’s too early/late in the school year” or “they won’t qualify for these services” should NEVER be accepted answers). Unfortunately, families often still run into problems requesting or receiving these services for a variety of reasons. Click here to read the Wisconsin Department of Public Instruction’s guidelines for disagreeing with a school’s decision and the information for a full mediation and resolution process. Please note, these guidelines vary by state. Check with your state’s Department of Public Instruction for your most accurate information.

I couldn’t end without the mention of another one of the Herma Heart Center’s top school integration programs. Project ADAM (Automated Defibrillators in Adam’s Memory) is a national hospital-based community outreach program supporting implementation of written and practiced cardiac emergency response plans for sudden cardiac arrest in schools. My final piece of advice for all cardiac families – whether it’s returning for a new school year or school re-integration after an extended hospital stay- make sure your child’s school has both an up-to-date Automated External Defibrillator (AED) and an emergency cardiac response plan in place. You will find the Project ADAM Wisconsin Heart Safe Schools Checklist here. Take this checklist to your school’s nurse or administrator and request they complete and return it to Project ADAM if they haven’t already done so. Project ADAM will work with the school to make sure they have the necessary technology, appropriate emergency action plans, and a schedule of practices and drills to maintain optimum cardiac safety in school.

I hope you’ve found some useful information to set your child on a path to a successful school year. Below you will find one final recap of my shared resources and links. Remember, you are the expert on your child, but I urge you take advantage of those individuals, agencies, and programs there to support you!

Complete School Intervention Resource List

Proactive Planning

Communication

Services


SAMSUNG CAMERA PICTURES

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

School Intervention Series: Making A Difference

With the summer winding down, it’s just about time to head Back-to-School. Join us through a brief break from our Mental Health Series, as we re-introduce guest writer Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin. The blog will feature Kyle’s 3-part series for PCHA beginning with an introduction on what she does and why. Over the next couple weeks, we will share Kyle’s tips, tricks and recommendations for navigating a school’s system without a dedicated school liaison (and how to start advocating for one in your cardiac center) and provide a collection of resources on how to ensure your child is getting all of the services and supports required to have equal access to a quality education.

 

 

Twenty nine years ago my sister was born with Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect that left a chamber of her heart severely underdeveloped at birth. This was at a time when medical technology and surgical repairs options were very limited for a complex baby like my sister. While she ended up losing her battle with HLHS, her short time on Earth ultimately began a battle much greater – the fight to eradicate congenital heart defects completely and in the process, improve medical outcomes and quality of life for those currently affected. Today, the Herma Heart Center (HHC) at Children’s Hospital of Wisconsin is known for having the best published survival rates of HLHS in the world. However, a top recognition like this is not achieved without constant work towards excellence and innovation in all areas of care.

 

Herma Heart Center

How does this relate to PCHA’s “Back-to-School” theme this month? It does on so many levels! Two years ago I was a kindergarten teacher, loving every minute of every day guiding 4 and 5-year-old kids as they discovered their world. I worked in the inner city of Milwaukee at a low-income Charter School – all of my students considered “at-risk” due to a variety of different statistics. Every day I sought to plan lessons that not only were rich in academic content and student engagement, but also focused on building a classroom culture of strong future leaders and community advocates. While I had always been involved with the Herma Heart Center on various levels because of my family’s deep connection, I was a teacher. I loved being a teacher.

In 2015, I got a call. The Cardiac Neurodevelopmental Follow-Up Program, one of the HHC’s leading whole-child focused programs, was expanding and looking to hire a School Intervention Specialist after they noticed a very high need for multifaceted school intervention in students with complex health needs – specifically in the area of pediatric cardiac neurodevelopment. The job requirements outlined a liaison-type service, with the goal of working to ensure clear and consistent communication between the medical staff, the family, and the child’s school at all times. I began researching far and wide. I wanted to learn everything I could about how CHD affects a child’s neurodevelopmental functioning and what type of supports schools have in place to modify for or accommodate these children. All of my searches came up empty! There was nothing. While significant literary research supported that children with complex health needs and chronic illness are at a greater risk of reduced student engagement, higher disruptive behavior, lower academic achievement, an increased exposure to bullying (among many other well-documented negative educational outcomes), structured programs for school re-entry and intervention are rare. In this moment I knew that I needed to step in to fill a role much larger than a classroom teacher.

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The School Intervention Program officially “went live” in February 2015. I began with a very focused population of heart transplant patients that pinpointed those re-integrating into school post-transplant, but also offered intervention services to all of our heart transplant patients no matter how many years post-transplant they were. The response was huge. My patient population quickly grew to all heart transplant patients (including those wait-listed for transplant) and several patients with advanced heart failure who were anticipating a future transplant. My pilot study served 55 cardiac patients, ages 3 (preschool) to 24 (college). The schools’ concerns that were addressed included: attendance and absence support, special education support, attention and behavior plans, and documentation/medical record communication – just to name a few of the big categories. Of those 55 patients, 57% have exited the program with their school concern fully resolved, 36% still receive ongoing school intervention but are making great progress towards their school goals, and 7% transitioned to different medical centers where school intervention could no longer be followed. I’ve witnessed one of my high school student graduate with his class just 5 months post-transplant, I’ve heard from a school nurse that she could not believe a student is finally getting to live a “normal” life without any medical interventions needed during the school day, and I’ve helped a mom send her 7 year old to school for the first time because she finally felt confident the school could handle his needs.

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You may be thinking, “That’s great, but my child did not have a transplant. This doesn’t help us.” I am hear to tell you that it does! By doing a formal pilot study on a small population of patients and proving there is an urgent need for formalized school support, I am establishing both attractive outcomes data and the sustainability of this type of position. I frequently share these outcomes with colleagues, speak about my work at a director and leadership level, and even present at international conferences just so people can see how this seemingly non-medical work is directly related to improved medical outcomes. And guess what? People ARE listening.

 

Herma_Kyle

I am excited to be sharing with you over the next couple weeks to help bridge the very different worlds of medicine and education to ensure that children with complex health needs, specifically CHD, are not falling though the gaps. Here’s to a great school year!

 

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

Congenital Heart Disease (CHD) impacts about 40,000 newborns a year in the United States. Single ventricle defects are a complex subgroup of CHD, affecting approximately 5 out of every 100,000 newborns. In addition to normal pediatric and adult primary care needs, these patients are impacted by frequent follow up, complex testing, screening, re-interventions, surgeries, consulting providers, and care throughout a lifetime. This care not only impacts the patients, but the entire family system, including siblings, parents, grandparents, and extended family. The Comprehensive Single Ventricle Roadmap is a novel idea stemming from the persistent questions families have brought forward trying to understand the process of single ventricle disease over time and its neurodevelopmental effects.

Speaking from my personal experience as a younger sibling of a single ventricle patient, this kind of guide has been desperately needed for many decades. The first “blue babies” were given options for a better quality of life, and as research and outcomes have improved, these patients are now living into adulthood. Since arriving at Lurie Children’s Hospital in 2016, I am pleased to see the transformation of the idea evolve so promptly into a formal patient engagement strategy (available in English and Spanish) under the guidance of our entire team. I am specifically incredibly grateful to Dr. Kiona Allen and Amelia Aiello who agreed with this vision, making it a reality for patients and families.

Fontan Roadmap

https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/single-ventricle-roadmap.aspx

Guiding Families Through the Journey

Now that you have been introduced to the roadmap, imagine yourself learning about the diagnosis of single ventricle CHD prenatally. The typical excitement and thrill of learning you are on a road to being a parent of a healthy new baby is not the same joy for parents and families faced with an incurable single ventricle disease. The stops along that road and the topics you’ll discuss are critical, important, costly, and personal. The unknowns, outcomes, and trajectory of this road trip are overwhelming to comprehend. Emotions and fears are often high, breaking down the normal anticipatory excitement and joy.

The Comprehensive Single Ventricle Roadmap is not a pathway any parent eagerly seeks out; yet, it is essential to living life with single ventricle disease. It requires thoughtful planning in an already busy family life schedule to organize the daily care that must be performed seamlessly within the diagnosis and treatment of single ventricle disease. This population is only several decades old; thus, the unknowns within single ventricle care are many. Investigating the latest research outcomes is an essential part of the journey — this includes understanding and coping with the lack of care options. Medical science and care have often not evolved fast enough to benefit children with single ventricle disease. Discussions with families about the surgical and other milestones on the journey are not easy conversations. The unique framework of the roadmap provides a visual guide, allowing families a way to understand the disease process. It also allows for valuable transparent discussions about opportunities for positive coping, hope, and fostering resilience along individual family’s pathway.

The Roadmap is not a “cookie cutter” framework meant to fit every family’s story completely; no two patients (and families) will have the same journey. However, it helps families visualize and more fully understand what care throughout a lifetime looks like, and allows families to anticipate major milestones in a specific time span of a child’s life, such as the newborn surgery. Identifying this point in time allows for transitional discussions regarding navigation in and out of acute and chronic care. These conversations often raise questions about the acute issues currently present for the patient and allow opportunities to explain our other patient engagement tools. For more helpful tools follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/home-monitoring-program.aspx

Typical questions from families during the newborn surgery period include:

  1. How will I be able to care for my newborn after surgery?
  2. What is home surveillance monitoring and will I be able to breastfeed?
  3. What if I need to go to the ER or another health care provider?
  4. What does follow up look like in the HeArT clinic (High Acuity Transition Clinic) and the pre-Glenn visit?

Not all stop points are anticipated. A couple examples of unplanned cardiac triggers across a lifespan include a 12-month-old s/p Glenn with moderate to severe AV valve regurgitation failing to thrive on medical therapy. Because of the cardiac issues, this patient moves into the blue circle entitled additional procedures. This may include potential re-operation for valve concerns before the anticipated next surgery in the journey, the Fontan operation. A second example is a 15-year-old s/p Fontan with arrhythmias requiring placement of a pacemaker/AICD that moves into the additional procedures post-Fontan for arrhythmias not responsive to medical management. Lastly, a 40-year-old s/p Fontan with failing function requiring listing for transplant that moves into the additional procedures post-Fontan and in essence trades one disease state for another (single ventricle physiology for transplant).

Striving for Anticipatory Guidance and a Successful Transition to Adult Care

One goal of the roadmap is to provide cardiac anticipatory guidance for families on the normal developmental milestones in life (marked by schoolhouses and graduation caps) and indicates the need for continued cardiac neurodevelopmental screening. The roadmap creates a framework to discuss difficult topics, potential complications, disease trajectory, issues that develop because of single ventricle physiology, and new cardiac concerns. When new issues develop that require attention, we have open conversations with the family that outline goals, medical options, surgical palliation and outcome statistics. Included in the conversation is a diagnosis review utilizing images that are tailored to the child’s individual anatomy to explain the current anatomy and potential next phase of the child’s journey.

The second goal of the Comprehensive Single Ventricle Roadmap is to foster developmentally appropriate health-promoting behaviors as our patients transition to adulthood to enhance the longer term quality of life. In the early-late teen and adult years, decision-making shifts from primarily parent-driven to patient-driven. This can be challenging for all involved. The milestones on the roadmap visually guide patients and families along the valuable process of each child’s maturation, identifies opportunities for transition of care from parents to patients, and highlights ongoing surveillance monitoring of the many consequences of Fontan physiology to achieve the ideal outcome with the best quality of life. This process is individual for each patient and evolves over time. Success is achieved when coordinated, developmentally appropriate, and psychological supportive care creates patients that advocate for themselves in adulthood and maintain the most positive health promoting behaviors in lifeTo see more on developmental Milestones follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Documents/developmental-milestones.pdf

Lurie Children’s Hospital has a creative way of facilitating this transition within the Single Ventricle Program. The pediatric single ventricle clinic overlaps monthly with the single ventricle adults being seen in the Adult Congenital Heart Disease (ACHD) program. This allows for collaboration, a slower transition, and a formal hand off of care over time instead of a more rigid fixed timeline. To learn more on our website, follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/index.aspx

 

 

Michelle Steltzer has 20 years of nursing experience in fields from oncology to pediatric cardiology. She received both her bachelor and master’s degrees in nursing from the Univeristy of Wisconsin-Madison.

Michelle had a critical role in the development of the first home surveillance monitoring program for pediatric cardiology patients way back in 1999. She then worked collaboratively with the Joint Council on Congenital Heart Disease Quality Initiative while employed in Boston. Michelle expanded feeding protocols within congenital heart disease to include breastfeeding.

In addition to having worked at Boston Children’s Hospital and Children’s Hospital of Wisconsin, Michelle now works as a pediatric nurse practitioner at Ann & Robert H. Lurie Children’s Hospital of Chicago. Growing up with a sibling with a CHD, Michelle learned by experience and by watching her mother just what services were lacking for CHD families.

 

PCHA Media Relations

Contact PCHA

Inquiries from reporters and members of the media, please email advocacy@conqueringchd.org or call (608) 370-3739.

Frequently Requested Information:

Key CHD Facts:

  • Congenital Heart Disease (CHD) consists of problems with the heart’s structure that are present at birth with potential lifelong implications.
  • CHD is the most common birth defect.
  • 1 in 100 babies are born with CHD.
  • Nearly 40,000 infants in the U.S. are born with CHD each year.
  • CHD is the leading cause of birth defect related deaths.
  • Approximately 25% of babies born with CHD will require life-saving intervention in the first weeks of life.
  • Approximately every 15 minutes a family learns their child has CHD.
  • There is no cure for CHD.
  • Estimates suggest there are 2.4 million Americans living with CHD.
  • People with CHD are at risk for serious medical complications and require specialized care for life.
  • CHD is now the most common form of heart disease during pregnancy in the U.S.
  • Costs for hospitalizations related to congenital heart disease were more than $6 billion in 2013.

For additional information, please reference our CHD Fact Sheet.

About PCHA

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.”  We are founded on the key purpose to be the resounding voice of the pediatric patient population and are accomplishing this through collaboration with patients, parents, providers, and partner organizations in order to improve quality and outcomes through CHD education, support, research and awareness.

Our key program areas include:

  • Patient Advocacy and Policy Work
  • Promotion of Federal Research and Surveillance Funding
  • Patient Engaged Care and Patient Empowerment
  • Patient Education and Support
  • Transparency and Public Reporting of Hospital Outcomes
  • Quality Improvement
  • Sustained Access to Recommended Specialized Care Throughout the Lifespan
  • Promotion of Meaningful and Targeted Research

 

 

National Reading Month: It’s My Heart Book

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the first post of our series, the Children’s Heart Foundation shares an overview of the It’s My Heart book, a resource for families affected by CHD. PCHA and the Children’s Heart Foundation are partnering to include the It’s My Heart book in every Conquering CHD Kit. 

 

 

 

Receiving a congenital heart defect (CHD) diagnosis is often an emotional, confusing and overwhelming time.

In 2003, The Children’s Heart Foundation (CHF) – along with a dedicated group of doctors, nurses and parents – set-out to address a dire need noted by patients with CHDs and their loved ones. Although doctors and nurses often explained things well, written materials were either too simple (pamphlets on how the normal heart works) or too complex (medical journals). There was a need for a resource guide with clear writing and illustrations on the most common kinds of heart defects, tests, equipment, surgical procedures and medications.

Published in 2004, It’s My Heart, was written in plain, understandable language. It provides descriptions of the types of CHDs, explanations of the various tests, surgical procedures and treatments for CHDs. This book also contains helpful “before and after” diagrams, a glossary of medical terms, and much, much more.

“Hours after my son was first diagnosed with a CHD at 2 days old, our nurse handed me a copy of It’s My Heart in the hospital. I remember being so scared and confused at that time; it felt as if everything was broken,” said Sally Powers, CHF Executive Board Member & Heart Mom to Sam.

“But that book was one of the first resources I had to help lift me up and move me forward on our journey with CHD,” Sally continues. “And that made me feel hopeful.”

Today, in its’ second edition, It’s My Heart is still a widely used resource book. CHF distributes this book to patients, parents, family members, healthcare professionals and friends of congenital heart defect patients worldwide.

It has always been a high priority for CHF to offer the book free-of-charge. Thanks to support from Medtronic Foundation, Northwestern University Dance Marathon 2011 and various grants, CHF has been able to continue to do so.

“I’ll always be thankful that The Children’s Heart Foundation knew the need for newly diagnosed parents to have that kind of easy-to-understand resource at such a critical time,” Sally said. “My son is 8 now and I still refer to It’s My Heart often.”

To order your free copy of It’s My Heart, please visit: http://weblink.donorperfect.com/Itsmyheartbookorder.
If you have any questions or to place an international order, please contact Rosemary at RWheeler@childrensheartfoundation.org.

 

 

About The Children’s Heart Foundation

The mission of The Children’s Heart Foundation is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects. For more information, please visit:www.childrensheartfoundation.org. Follow us on Facebook and Twitter.

 

School Intervention Series: Advocating for a Program

In her final post of a three-part series, Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin, details how to start advocating for a dedicated school liaison at your cardiac center. If you missed the series, you can find her first post here and Complete Resource Guide here.

Advocating for equal accesses to quality education for children with complex health needs is often a difficult process. At times, the numerous boundaries families face seem to make it almost impossible to get appropriate evaluations and support services in place, especially within schools. It is in the untangling of these messy webs of communication and information where I find some of my most fulfilling work. Having a dedicated school liaison position within your cardiac center (usually as part of a multidisciplinary neurodevelopmental follow-up team) is an ideal situation for receiving whole-child focused, comprehensive care; however, there are many ways for parents to step in and be the driving force in centers that have not yet established these types of innovative programs.

Understanding Neuropsychology

Neuropsychology is the study of the relationship between the brain and behavior. During a neurodevelopmental evaluation a child’s level of cognition and intellectual functioning, emotional and behavioral functioning, and social functioning are assessed. Each assessment will track milestone progress in areas such as: motor skills, play skills, feeding, language development, growth, nutrition, and hearing. The goals of this type of assessment are to identify the child’s ability to function in a group of same-age peers, identify the factors that influence their actions and reactions, determine how levels of functioning  are influenced across different medical treatment/intervention stages, determine the response to or recovery from specific treatments, monitor overall brain development, and provide recommendations for schools in effort to implement appropriate special education services and other learning supports. A neuropsychological evaluation is typically recommended for children between the ages of 6 month to 18 years, who are at high risk for developmental disorders, disabilities, or differences. While the child’s age determines the way they are evaluated, this assessment usually consists of formal pencil-paper testing and interactive completion tasks such as match-making, completing patterns or sequences, and following oral directions. In addition, the neuropsychologist/psychologist will review psychosocial family factors, as well as the child’s developmental and medical history.

The Benefits of a Cardiac Neurodevelopmental Follow-up Program

Children with congenital heart disease are considered high-risk for developmental differences and delays due to many factors related to their medical history, including medication, treatments, and surgical repairs. Fortunately, research also shows that with early identification of these learning delays and appropriate follow-up services put in place, these children can go on to lives long and successful lives.

Neurodevelopmental follow-up programs are designed around a multidisciplinary team of experts who conduct regular, comprehensive assessments of a child’s growth and progress in all areas of functioning and development (also called “neurodevelopment”), and provide families with important information, recommendations, and resources needed to ensure the best possible educational outcomes.  There are several school-age transition points that tend to show an increase of challenges (for example: 3rd grade is a time when children become more independent at school, thus learning difficulties become more evident; the transition from 5th to 6th grade requires a shift in complex problem-solving and organizational skills, and so on). Ongoing neurodevelopmental evaluation is recommended as it is typical for new concerns to arise at different developmental stages.

Once a neurodevelopmental evaluation has been conducted, families will have a better understanding of their child’s overall level of functioning and specific cognitive strengths and weaknesses. Recommendations may be given for academic assistance in terms of accommodation or modification in school or for further psychological or psychiatric therapies/treatments/evaluations. Recommendations may also include planning for transitional service from pediatric to adult care. Most evaluations will also conclude with recommendations for continued skill development at home, ideas for discipline and/or behavior management, and additional resources for support.

Advocating for Neurodevelopmental Follow-up, School Intervention, and Like-programs

I always recommend that my families educate themselves on the developmental milestones of “typically developing” children. I whole-heartedly believe that all children are different and hit “normal” milestones at all different times, but early identification of differences or delays (even if it’s just scheduling an assessment or evaluation) overwhelmingly leads to higher overall academic success rates.

Once you’ve noticed a concern it is important to talk to your child’s primary care provider (general pediatrician) or cardiologist right away. These medical providers will be able to listen to your concerns and help identify action steps (i.e. request an Individualized Education Plan, set up a Neurodvelopmental follow-up, etc). In the event that your cardiac center does not have formal programs in place to assess and assist with neurodevelopmental and educational challenges, there are still ways to seek necessary support. For example, most cardiac programs have a dedicated social worker. A family might request to work with a social worker to express school concerns and connect with existing resources or school support services found within the community. The social worker might be able to schedule a meeting with a hospital-based psychologist or child life specialist who can further assist if your cardiac center does not have these as dedicated cardiac positions.

Parents as Advocates

Parents are often the strongest driving force behind hospital innovation. If your cardiac program does not have access to neurodevelopmental or school support services, you should be asking the question, “why not?” I encourage families to ask their providers, “where do you send your patients for neurodevelopmental follow-up?” (as opposed to the question, “do you offer any neurodevelopmental follow-up?”) and push them to make those hospital-based and community connections to complete their child’s medical team needs. Stay vocal and active in this movement to make neurodevelopmental follow-up and school liaison services part of the expected standard of pediatric healthcare, specifically in the area of cardiology, where this type of comprehensive medical follow-up program is still very new.

Wan tot learn more about the Herma Heart Center’s Neurodevelopmental Follow-up Program? Visit http://www.chw.org/medical-care/herma-heart-center/programs/developmental-follow-up-program/

Want to learn more about the Herma Heart Center’s School Intervention Program? Visit http://www.chw.org/medical-care/herma-heart-center/programs/school-intervention-program/


Kyle Herma

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

School Intervention Series: A Complete Resource Guide

PCHA welcomes back Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin School for part 2 of her 3 part series about School Intervention. If you missed her first post, you can find it here. Today, Kyle shares a wealth of information for navigating a school’s system without a dedicated school liaison. Her complete resource list is included at the end of this post for easy reference. 

Going back to school after a diagnosis or hospitalization can be scary for everyone! Families might worry about how their child will transition, schools might worry about how they will care for the child, and children might worry about what to say and how to act around friends they haven’t seen in a while (just to name a few examples). Each and every one of these concerns is valid and understandable. So, how do we swing that pendulum of emotion from feeling anxious to feeling prepared? Continue reading

School Intervention Series: Making a Difference

Continuing our September Back-to-School theme, we are excited to introduce guest writer Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin. Kyle is blogging a 3-part series for PCHA beginning with an introduction on what she does and why. Over the next couple weeks, Kyle will share tips, tricks and recommendations for navigating a school’s system without a dedicated school liaison (and how to start advocating for one in your cardiac center) and provide a collection of resources on how to ensure your child is getting all of the services and supports required to have equal access to a quality education.

Twenty nine years ago my sister was born with Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect that left a chamber of her heart severely underdeveloped at birth. This was at a time when medical technology and surgical repairs options were very limited for a complex baby like my sister. While she ended up losing her battle with HLHS, her short time on Earth ultimately began a battle much greater – the fight to eradicate congenital heart defects completely and in the process, improve medical outcomes and quality of life for those currently affected. Today, the Herma Heart Center (HHC) at Children’s Hospital of Wisconsin is known for having the best published survival rates of HLHS in the world. However, a top recognition like this is not achieved without constant work towards excellence and innovation in all areas of care.

Herma Heart Center

How does this relate to PCHA’s “Back-to-School” theme this month? It does on so many levels! Two years ago I was a kindergarten teacher, loving every minute of every day guiding 4 and 5-year-old kids as they discovered their world. I worked in the inner city of Milwaukee at a low-income Charter School – all of my students considered “at-risk” due to a variety of different statistics. Every day I sought to plan lessons that not only were rich in academic content and student engagement, but also focused on building a classroom culture of strong future leaders and community advocates. While I had always been involved with the Herma Heart Center on various levels because of my family’s deep connection, I was a teacher. I loved being a teacher.

In 2015, I got a call. The Cardiac Neurodevelopmental Follow-Up Program, one of the HHC’s leading whole-child focused programs, was expanding and looking to hire a School Intervention Specialist after they noticed a very high need for multifaceted school intervention in students with complex health needs – specifically in the area of pediatric cardiac neurodevelopment. The job requirements outlined a liaison-type service, with the goal of working to ensure clear and consistent communication between the medical staff, the family, and the child’s school at all times. I began researching far and wide. I wanted to learn everything I could about how CHD affects a child’s neurodevelopmental functioning and what type of supports schools have in place to modify for or accommodate these children. All of my searches came up empty! There was nothing. While significant literary research supported that children with complex health needs and chronic illness are at a greater risk of reduced student engagement, higher disruptive behavior, lower academic achievement, an increased exposure to bullying (among many other well-documented negative educational outcomes), structured programs for school re-entry and intervention are rare. In this moment I knew that I needed to step in to fill a role much larger than a classroom teacher.

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The School Intervention Program officially “went live” in February 2015. I began with a very focused population of heart transplant patients that pinpointed those re-integrating into school post-transplant, but also offered intervention services to all of our heart transplant patients no matter how many years post-transplant they were. The response was huge. My patient population quickly grew to all heart transplant patients (including those wait-listed for transplant) and several patients with advanced heart failure who were anticipating a future transplant. My pilot study served 55 cardiac patients, ages 3 (preschool) to 24 (college). The schools’ concerns that were addressed included: attendance and absence support, special education support, attention and behavior plans, and documentation/medical record communication – just to name a few of the big categories. Of those 55 patients, 57% have exited the program with their school concern fully resolved, 36% still receive ongoing school intervention but are making great progress towards their school goals, and 7% transitioned to different medical centers where school intervention could no longer be followed. I’ve witnessed one of my high school student graduate with his class just 5 months post-transplant, I’ve heard from a school nurse that she could not believe a student is finally getting to live a “normal” life without any medical interventions needed during the school day, and I’ve helped a mom send her 7 year old to school for the first time because she finally felt confident the school could handle his needs.

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You may be thinking, “That’s great, but my child did not have a transplant. This doesn’t help us.” I am hear to tell you that it does! By doing a formal pilot study on a small population of patients and proving there is an urgent need for formalized school support, I am establishing both attractive outcomes data and the sustainability of this type of position. I frequently share these outcomes with colleagues, speak about my work at a director and leadership level, and even present at international conferences just so people can see how this seemingly non-medical work is directly related to improved medical outcomes. And guess what? People ARE listening.

Herma_Kyle

I am excited to be sharing with you over the next couple weeks to help bridge the very different worlds of medicine and education to ensure that children with complex health needs, specifically CHD, are not falling though the gaps. Here’s to a great school year!


SAMSUNG CAMERA PICTURES

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

Guided Questions Tool

Ask these important questions to your care team.

Click here for a printable .pdf version of the Guided Question Tool/Questions to Ask your Cardiac Care Team.

 

QUESTIONS TO ASK THE CARDIAC TEAM

It is hard to hear the words “there is something wrong with your baby’s heart.” But, there is hope! Thanks to new and better treatment, your baby’s chance of surviving is better, with the right care.

At the Pediatric Congenital Heart Association (PCHA), we believe that information is important when making decisions about the care of your child.

For this reason, the following questions were designed to help when you talk with the care team.  Some of this information may not be familiar or hard to understand.  We have included key ideas on the last page to help.  Your care team can help you understand, too.

Experts think there are certain care standards that a quality treatment center should meet.  Not all centers are the same. Some families may want to contact another center to better understand treatment options. Often, second opinions are reassuring; further building trust between you and the team you are working with.

At any time, if you feel you need help or extra support, please contact PCHA.  We do not have all the answers, but we can certainly help guide you.

For more information about congenital heart disease and links to additional resources, please visit our website at conqueringchd.org.

Information About Your Cardiac Center:

  1. How many procedures do you perform each year? How many times have you and your program performed this procedure or ones like it in the last year?  Over the last 4 years?
  1. What is the survival rate for this type of procedure at the time of hospital discharge? After one year? How do your results compare to other centers’ results?
  1. What are the most likely complications or things that can go wrong, with this procedure and how often do they happen within one year of this procedure?
  1. Do you share your results with national data programs such as the STS Database or Impact Registry to help improve care? Is this information open to the public?
  1. Do your surgeons have special training in congenital heart surgery? What other types of special training do your doctors and nurses have?
  1. How are family members included in the decision making process? How will the care team give me information, or reports, before, during, and after the procedure?

Information About Your Hospital Stay:

  1. How many days do you think my child will be in the hospital, both before and after the procedure?
  1. What are my options for when, where and how to deliver my baby? How do you work together with my OB/GYN/Midwife to prepare for my delivery and my care right before and after delivery?
  1. How do you work together with my baby’s doctor after birth and after the procedure?
  1. If my baby needs to stay in the hospital after delivery to prepare for a procedure, where will he/she be? What about after the procedure? Do you have a cardiac intensive care unit (CICU) that cares mainly for children with heart defects?
  1. Will I get to hold my baby before or after the procedure? If so, when and how?
  1. Will I be able to breastfeed my baby after delivery and again after the operation? Will my baby require a special diet? Should I expect my baby to take a bottle or breast feeding without problems?
  1. What do you do to help prepare parents to take their babies home from the hospital?
  1. What support is available for me and my family? For example, can I talk to other families that also have children with heart defects? Do you provide financial, nutritional, and mental health support?

Looking Ahead:

  1. What are the expected long-term results for this heart defect and its procedure? What is my child’s life expectancy or how long is my child expected to live? Are there other possible life-long problems that I need to watch out for?
  1. Thinking about how my child will grow and develop, what should I expect from them as a preschooler, school-age child, a teenager and as an adult?
  1. As my child gets older, does your medical care provide a plan for transitioning from pediatric to adult care?


KEY IDEAS

Procedures – These questions can be used to talk about a number of treatment options including surgery or cardiac catheterization.  Cardiac catheterization, which is not surgery, can be used to find and treat some heart conditions.   During the catheterization the doctor uses a long, thin, flexible tube that is inserted through a blood vessel.

Number of procedures – Total number of procedures performed at a center may be an indicator of quality, with caution given to centers that don’t perform many surgeries.  However, some heart defects are rare and the number of times a procedure is performed may be small, even at the biggest centers.

Survival Rate – Most babies live through their first 30 days after a procedure, a common measurement of success for surgeons.  It is important to ask about survival rates after 30 days, too.

Training – Some doctors have specialty training including certificates for pediatric congenital heart surgery.  Make sure your surgeon has this training.

Data sharing – Most centers collect information, or data, such as number of procedures, survival rates and outcomes, using national data programs such as the Society of Thoracic Surgeons (STS) Database or the Impact Registry.  Many centers now make this information available to the public.  If a center does not give their data to a national data program, or does not share their outcome data publicly, you should ask why.

 

THE IMPORTANCE OF TRANSPARENCY

At the Pediatric Congenital Heart Association (PCHA), our mission is to “Conquer Congenital Heart Disease.”  We believe that patient and family empowerment is essential to achieving this mission.

We support informed decision-making that will allow patients and families to get the best care possible.   Health information that is patient-centered (about the patient), accurate (correct), accessible (available to every person), and communicated in the right way is all part of patient and family empowerment, resulting in improved outcomes in both patient health and family experience.