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

 

Happy Birthday PCHA – #ConqueringCHD Week!

Here are a few ways to

celebrate our 4th Birthday with us!


Use your Social Media talents as we work to reach 450,000 people and get 15,000 page likes!

It’s your week to shine as a PCHA #ConqueringCHD social media ambassador!

In February, our education efforts had a total weekly reach of 344,000 people for our #CHDAware campaign.  Wow – that is more than double the previous year’s CHD week!  That is a huge impact!

We’re also currently at 14,798 likes on our facebook page and we would love to get 15,000 followers by the end of the week!

Join the Social Media Blitz 

During this help us cover social media with facts and faces. Like, share, comment and tag using the hashtag #ConqueringCHD.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by sharing our memes throughout the week.

Make it personal – Using the hashtag #ConqueringCHD, share stories and photos about those in your lives who are Conquering CHD. Tag us on Facebook, Twitter or Instagram. Whether it is conquering CHD at the doctors office, at school, on the playing field, welcoming a rainbow baby, helping others, advocating, or celebrating a birthday of your own, during #ConqueringCHD week, we want to celebrate with you!!

Invite others – we can do the work for you – simply guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

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Write your Members of Congress

Tell them it is #ConqueringCHD Week.  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!


Gear Up!

Check out our online store for #ConqueringCHD apparel, bags, buttons, and more!  Don’t miss our great strawberry smelling pens, too!! 

 


Attend an Event

The party goes on after #ConqueringCHD Week.  Consider joining us for one of our great Congenital Heart Galas:

Third Annual Congenital Heart Gala on September 16th, 2017 at the Milwaukee Art Museum, Milwaukee Wisconsin.

Inaugural Congenital Heart Gala on September 9th, 2017 at the Four Seasons Downtown, Denver, Colorado.

And check out events happening in your area by connecting with one of our local state chapters HERE:


Finally, Celebrate all you are doing as, together, we are #ConqueringCHD!

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, 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


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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.

Support PCHA in the Final Hours of Macy’s Shop for a Cause Charity Challenge!

PCHA is involved in the Macy’s Shop for a Cause Charity Challenge, a friendly fundraising competition raising money for causes like ours. We’ve got just over a few hours to go before our campaign ends. As of this morning we are sitting in 11th place sitting at $13,300 raised. When you add in the generous $3,000 from one of our Medical Advisory Board members as a Challenge Grant and the additional $2,000 from Macy’s we won during Bonus Challenge #1 that brings us to $18,300!! That’s amazing work and brings us almost to our goal of raising $25,000.

It’s not too late to help us Conquer CHD!

We are moving Mountains:

  • Hosting 2 national conferences in 2017 about patient empowerment through public reporting of hospital outcome information.
  • Received national coverage of our efforts on this issue in U.S. News and World report
  • Co-hosted a congenital heart legislative conference discussing public health policy, research and data for congenital heart disease.
  • Presently have a congenital heart disease research law working it’s way through Congress
We are touching lives:
  • In the first 6 months of 2017, we distributed more than 3000 Conquering CHD care packages providing essential resources and support directly to patients and their families
  • Shared more than 5000 copies of our Guided Questions Tool to help patients and family have important conversations with their doctors.
  • Reach between 50,000-200,000 people each week on social media with our education, support, research and awareness messaging.
PCHA is the resounding voice of the congenital heart community. Our voice is strengthened by the involvement of all of those who share our mission. 
Help us reach our goal of raising $25,000 to further that mission. 
  • $5 Provides a family with an educational resource card
  • $50 Allows us to provide a Conquering CHD care package of educational materials and Comfort items to a family whose child is in the hospital
  • $100 Helps us reach 20,000 people through social media
  • $250 Helps support an educational hospital site visit.
  • $500 Sponsors a parent or patient to attend our Legislative Conference in Washington D.C., and advocate for all those impacted by CHD by educating our members of Congress about congenital heart disease on Capital Hill.
 

 

 To Learn more & Donate CLICK HERE

Aron Matthew Northcraft

Aron’s mother Sara has been an active member of the CHD community, helping to educate people on how to support families after losing a child and advocating at the Legislative Conference in years past. Here she shares his story.

Aron Matthew Northcraft was born January 10, 2007 with Hypoplastic Left Heart Syndrome (HLHS). He was flown immediately after birth to Children’s National Medical Center in Washington, DC where he underwent the Norwood procedure the following day. He recovered, and in May of 2007, Aron, had the second (aka Glenn) of the three stages of surgeries required of all HLHS babies. The next 22 months of Aron’s life were spent at home simply being a little boy. Aron loved playing ball of all kinds (football and bowling were his favorites), loved Curious George and ADORED his big brothers (almost as much as they adored him)! During this time, it was very easy to forget that Aron was living with a very serious heart condition aside from the many medications he took daily.

Reality finally hit in April of 2009 when Aron went in for the third and final stage of surgery, the Fontan. Aron did not do post-Fontan well, and we found ourselves hearing the words “heart failure” and “transplant.” We soon began the journey to determine what was best for Aron. In October of 2009, we started the process of placing Aron on the heart transplant list. Unfortunately, God had other plans for our sweet boy. Aron passed away on November 19, 2009. He was such a blessing and truly a miracle! Aron will forever be in our hearts and on our minds.

When we started down the transplant road with Aron, I began to feel very angry every time I saw someone smoking. I was angry because Aron had no control over the cards he had been dealt and these “smokers” were destroying their life by their choice! Very soon, I was convicted about my health habits. Although I was not choosing to destroy my body with smoke, I was not eating right or exercising and, therefore, destroying my body by not being healthy. I decided in September (with the help of a very special lady) that I was going to start running. Our Fall was a little crazy…and heart wrenching.

After Aron passed away, I set a goal that I would like to run the Apple Blossom 10K in memory of my sweet boy! Our initial idea was to create “Team Aron” and have at least 4 people running in his memory. The more we talked about it, the more we realized how awesome it would be to have a gigantic team. We wanted to not only run in memory of Aron, but to raise awareness about Congenital Heart Defects and our local CHD support program.

Team Aron produced over 40 runners for the Apple Blossom 10K last year! We have encouraged Team Aron members to wear their shirts (if they are not running for a different cause) in as many races as they run in. In the past year Team Aron has been seen in many local foot races (Apple Blossom, Freedom Run, Apple Trample, Turkey Trot and the South Berkeley Christmas parade), a couple of local triathlons, as well as the Ford Ironman Florida.