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

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.

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.

Mental Health – Beyond Survival, The Struggle with Anxiety and Depression

PCHA continues its series on Mental Health with a piece by nurse and PCHA -VA Board Member, Sydney Taylor. Here, Sydney discusses contributing factors and prevalence of Anxiety and Depression in patients and parents affected by Congenital Heart Disease. 

 

 

 

For the first time ever, there are more adults living with a congenital heart defect than children. This is all thanks to improved medical technology, amazing advancements, and increased knowledge and awareness in treating CHD. While this is certainly incredible news, there are new – and unanticipated – aspects of treating survivors that we must now focus on.

When the field of pediatric cardiology was born, the main goal was to keep patients alive. The beginning

of this delicate science was unfortunately wrought with struggles in patient survival rates. However, as time went on and improvements and advancements in the field were made, patients started living to reach adulthood. But still, the main focus was to simply get these patients to see age 18. On the whole, aspects of everyday life patients may struggle with were – and sometimes continue to be – unaddressed by providers simply due to a lack of research and knowledge.

One of the biggest (and most prevalent) concerns facing CHD survivors is anxiety and/ or depression. Frequent and lengthy hospitalizations, painful procedures, and traumatic surgeries in childhood often lead to profound psychosocial impacts on patients. These impacts can range from minor to life-altering. For example, I can always feel myself becoming anxious when I smell rubbing alcohol or “hospital smell.” I remember this anxiety from childhood, but it had typically been isolated to healthcare-related environments. However, it made the beginning of nursing school and working in the clinical setting very difficult. Other patients may avoid seeking medical attention due to this anxiety, turn to substance abuse to cope with depression, or experience any number of ineffective coping strategies due to a lack of recognition of their unique needs in the medical community.

In a particular study done in adults with CHD, researchers selected patients who appeared to be “well-adjusted”; that is, did not outwardly exhibit signs and symptoms of depression or anxiety. Despite their appearances, 36.4% were found to have a “diagnosable psychiatric disorder, with anxiety or depressive symptoms being prominent [1].” Another study revealed that 18.3% of adolescents (age 12-18) with a heart defect suffer from depressive symptoms, compared with 3.3% of the healthy control group. Additionally, 30% of the adolescent CHD patients displayed anxiety, compared to 10% of the healthy control group [2].

Patients are not the only ones to suffer psychological distress related to their heart defect and treatment experience. Parents of CHD patients are also at risk, and possibly experience greater distress than their children. In a recent study done by the American Heart Association, an estimated 25%-50% of parents experience symptoms of depression and/ or anxiety, “and 30% to 80% reported experiencing severe psychological distress [3].”

There are more factors at play in the development of depression and/ or anxiety in the CHD population than you might think. Patients with more complex defects seem to be at a higher risk of developing anxiety and depression, and interestingly, those who undergo more cardiac catheterizations than others [2]. It has also been theorized that separation from parents due to early life-saving interventions shortly after birth may contribute to psychosocial abnormalities. Other researchers have postulated that early exposure to traumatic events (such as open-heart surgery) contribute to the development of ineffective coping mechanisms later in life. Most intriguing is recent evidence suggesting higher rates of cerebral insult secondary to cardiac dysfunction in CHD patients: in one study, 24% of infants had abnormal brain scans prior to surgery, and a staggering 67% had abnormal brain scans after surgery [4]. Literature is even more scant regarding parental anxiety and depression, but older parents and unemployed parents seem to have a higher incidence of depression [4].

If you or a loved one are struggling with anxiety or depression, it is important to speak with a healthcare provider. Now that heart patients are surviving, we need help in thriving. Don’t be afraid to reach out to someone you trust. You are not alone, and you matter.

 

For an additional guide on symptoms, tips, and when to seek help, please visit PCHA’s Educational Resource on Mental Health. Although this guide addresses parents in particular, the guidance it provides can be applied to patients experiencing difficulty with andxiety, depression, and post traumatic stress, as well. 

 

 

References:

1. Bromberg, J.I., Beasley, P.J., D’Angelo, E.J., Landzberg, M., DeMaso DR. (2003). Depression and anxiety in adults with congenital heart disease: a pilot study. Heart Lung, 32(105–110).

2. Awaad, M. & Darahim, K.(2015). Depression and anxiety in adolescents with congenital heart disease. European Psychiatry, 30(1), 28-31. doi 10.1016/S0924-9338(15)31916-7.

3. Woolf-King, S.E., Anger, A., Arnold, E.A., Weiss, S. J., Teitel, D. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6(2). doi 10.1161/JAHA.116.004862.

4. Pauliks, L. B. (2013). Depression in adults with congenital heart disease-public health challenge in a rapidly expanding new patient population. World Journal of Cardiology, 5(6), 186-195. doi 10.4330/wjc.v5.i6.186.

 

 

 

Sydney Taylor is a congenital complete heart block survivor, registered nurse, and is the Adult CHD Board Director for PCHA-Virginia. She has required pacemaker therapy since she was 15 hours old. She enjoys coffee and a good book, hiking and kayaking in the beautiful Shenandoah Valley area, visiting national parks, and making friends with any and all dogs.

 

Mental Health – Courtney’s Story – A Mom’s Perspective

As PCHA continues  our current series, Courtney Kile  shares with us how her experiences as Heart Mom to son Sully impacted her mental health.

I still remember the first time it happened. The surgeon had come in to tell us that the open heart surgery performed on my 3-day old son, was an outstanding success.  I remember looking at the surgeon calmly and saying, “Thank you very much,” and I turned on my heel and nearly sprinted down the hallway.  My mom and step mom followed close behind, calling my name, but my brain wasn’t computing her words.  I grabbed the door to the lactation room at the end of the hall and swung it open to close myself inside.

Then I completely and totally lost it.

I sat on the sterile vinyl chair, hugging myself, sobbing, and I think I even drooled a little.  I’d been holding in all these emotions, trying to process everything that happened in the last 30 hours and once I knew he “safe”, I couldn’t hold back anymore.  Little did I know, this would be the start of a near constant internal battle.

My son Sully was born in November 2011, seemingly healthy.  Just 36 hours later, local doctors discovered a Congenital Heart Defect and he was airlifted to the larger, metro hospital.  The 3rd day of his life, a team of doctors and surgeons operated on his 6lb. 8 oz. body. After a spectacular recovery from his first surgery, we handed him off to the surgeons again just 6 months later.  That surgery was also a screaming success.

I considered myself a pretty together person.  I felt like I handled stress well and had healthy coping skills (scarfing a king size Reese’s is a healthy coping mechanism, right?).  As time went on, I noticed myself beginning to change.  When we were getting ready to leave the house for any reason, I would retch and gag, and sometimes even vomit.  I would get sweaty and nervous, and I had no idea what was going on.  If I wasn’t with Sully, I would think of all the horrible possibilities that could happen.  I would replay these scenarios in my head until I would end up in a crying ball on the couch.  What was wrong with me?  Everything was fine, but I just couldn’t figure out what was going on.  I was too scared to talk to anyone about it.  I have a job that keeps me in the public eye.  What if they thought I was crazy?  What would my family think?  I knew it wasn’t normal to need a gallon of Pepto just to go and get groceries.   I’d dealt with a mild form of anxiety all my life, but never like this.  This was different.

Right after Sully turned two, a friend a mine sat me down for a frank discussion.  Being a mental health practioner, she’d seen this before.  She told me that she wanted me to talk to my doctor.  I tried to blow her off, but she pushed further.  Then she said it, “I think you have PTSD.”

Umm… what?

I was stunned.  I wasn’t in the military and hadn’t been through a war.  How could I possibly have PTSD?  There had to be another explanation.

Even though I thought my friend was way off base, I decided to call my doctor.  After talking to my doctor and being referred to a therapist, it was confirmed; I had Post Traumatic Stress Disorder (PTSD). The diagnosis was hard to swallow.  I blamed myself for not being able to control my emotions and thoughts.  I felt crazy.

Then, I started talking to other parents who’d been through the same or similar situations.  It was during these conversations that I realized that I wasn’t alone.  All these other parents had feelings like I did.  Though none of us had been deployed to a warzone, we were on the frontlines of our own; battling for our children’s lives. We’d waged war against catastrophic medical conditions that threatened to kill our children; and sadly, some of those medical conditions took the lives of some sweet warriors.

With a newly restored hope, I decided to talk more about PTSD and mental health.  There is such a stigma surrounding mental health issues.  The world is judgmental, that’s a fact, but we cannot stand silent in battle alone.  We need to talk about it.  We need to let the masses know that this is a real struggle that stems from healing wounds.  Seeing your child hooked up to 20 IV racks, with chest tubes, and a ventilator, is not something you can easily get over.  When you face the mortality of your child, you change. It is something that rocks you to the very core of your being.

The biggest thing I’ve learned since my diagnosis is self-care.  I can’t be the mom Sully needs unless I take care of myself.  Admitting you need help can be tough for people, but it is a necessity.  You can’t do this alone. Do not be ashamed.  We are in this together.

 

I’m happy to report that Sully is almost 6 years old now.  He is starting kindergarten in the fall. He’s happy, healthy, and the joy of our lives.  As for me, I’ve learned tips and tricks to manage my anxiety and panic.  Don’t get me wrong, I’m not perfect.  There are still times that leave me in a nervous mess, reaching for my inhaler.  But those times are few and far between. Every day I choose to take care of myself and not let PTSD control me.

 

 

 

 

 

Courtney Kile hails from Duluth, MN.  She is the mom to an amazing CHD warrior named Sully and wife to Robert.  Courtney and her husband run Project Heart to Heart, a Minnesota based non-profit serving families who have children born with Congenital Heart Defects. She is a paralegal by trade and uses her skills to help CHD families.

Mental Health – Brittany’s Story, Living with PTSD

An often unspoken topic with members of the CHD community is PTSD. For the first piece in our Mental Health Series, Brittany Foster, born with a VSD as well as other conditions, shares her experience with the illness, and how it has affected her life and her perspective.

 

 

“Doesn’t matter how tough we are, trauma always leaves a scar. It follows us home, it changes our lives, trauma messes everybody up, but maybe that’s the point. All the pain and the fear. Maybe going through all of that is what keeps us moving forward. It’s what pushes us. Maybe we have to get a little messed up, before we can step up.” Alex Karev, Grey’s Anatomy

 

For the last 26 years of my life I have experienced trauma.  Those of us living with CHD have been through more traumas than we can count. According to the National Childhood Traumatic Stress Network, there is a specific type of trauma called medical trauma. Their definition states, “medical traumatic stress refers to a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. These responses may include symptoms of arousal, re-experiencing, and / or avoidance. They may vary in intensity, are related to the subjective experience of the event, and can become disruptive to functioning.” The last five years that I have spent going to talk therapy, either once or twice a week, has helped me reflect on my traumas. Therapy has helped me to realize just how deep rooted a lot of my fears, insecurities, and worries are. My stress reactions may seem over the top and hard to explain. How can I possibly cry for hours over something that seems so simple? How can I sit there shaking at the smallest amount of pain but can endure more severe pain through my surgeries? What may seem like an exaggerated reaction to people observing my behavior, is actually a response due to post traumatic stress.

PTSD took many different forms throughout my childhood. I always had a constant fear of my sisters being kidnapped or going missing. For the majority of my childhood from age 6 to 12 I would cry my eyes out when I lost sight of them. “Mom, you were supposed to be watching them!” “Where are they!?” “They are gone.  Someone took them.  They drowned in the ocean.” I recall being terrified at sleepovers and crying to go home because I wasn’t around to watch them.

Reflecting on this time in my life, I am now more aware of exactly why I felt this way. Realizing why you feel a certain way really helps you make sense of how exactly to manage this type of traumatic stress reaction. Just treating the anxiety won’t make it go away and just labeling my behavior as “anxiety” didn’t help me. This “on edge” or “on guard” behavior was because I had a general lack of trust in the outside world. When I was younger I felt as though I was the only one who could protect them. Everyone else, including my parents, were not good enough to watch them. My deepest fear of my sisters being taken from me was directly tied to those who were a huge part of my life who hurt me. I didn’t realize when I was younger that even though the surgeries and procedures hurt, it didn’t mean these surgeons, doctors, and nurses were bad people. I didn’t realize that just because my parents had to leave at a certain point before surgery or during a test, it didn’t mean they weren’t able to protect me. It didn’t mean they were not competent enough parents to know where my siblings were. This lack of trust carried over into relationships as I got older but never was as extreme as the days I didn’t trust anybody to be around my family and me.

Anxieties as I got to junior high and high school became something different for me. I developed obsessions over things I never obsessed over before. My thoughts revolved around being a perfectionist in school. As soon as I had a project, I needed to get it done that day, or I would obsess over it. I needed to memorize every single thing on a page of notes in order to get an A on the test.  When taking the test I would convince myself that I failed. I thought of the worst possible outcome. This was my way of dealing with the bad news that I received over the years at appointments. It gave me something else to focus on. If I prepared for the worst, it wouldn’t seem as bad when the worst happened.

At age 17, this stress and anxiety turned inward. All that was building up over the years, I took out on my own body. I convinced myself I would be able to “cure myself” of all symptoms and struggles, if I just lost some weight and exercised. I became obsessed with this thought. At the time, it was a great distraction from all the physical and mental pain I so badly wanted to ignore. This obsession turned into an eating disorder. I lost 30 pounds in a matter of six months. I struggled through anorexia, bulimia, binge eating, and over exercising. My body image was terrible. I disliked my body for as long as I could remember. I found flaws practically every time I looked in the mirror, even at a young age.

My traumas from chronic illness and the pain, both mental and physical, left me with deep rooted emotional scars. In my 26 years of life, I have managed anxiety, PTSD, body image distortion, addiction in the form of eating disorders, depression, and self-harm. It is so easy for many outsiders to think “you have overcome so much, you should be thankful you are still here.” It is easy for people to think “why would you do that to yourself after everything you have overcome?” The truth is that, what I have so courageously overcome is the very thing that has triggered my emotional responses. I didn’t know how to talk about what I was feeling inside. I didn’t know how to express my fears of hospitals, lack of trust in people, lack of trust and hate for my own body. Now that I have a therapist, I can see just how important they are for anyone who has gone through trauma.

All of the emotions I have now, I choose to feel. I feel the positive emotions and celebrate happiness; I feel negative emotions and allow myself to cry, scream, get angry, and feel the frustration.  I allow myself to feel physical pain and no longer hide under the mask of “I’m fine”. The most important thing to remember is that it’s okay for your children, or you as a CHD warrior, to feel everything so fully.  Emotions are difficult.  Depression, anxiety, and addictions are sensitive topics but they need to be discussed. Use the voice you have. Spread awareness. Trauma leaves scars, both visible and invisible.  The visible ones I’m sure start conversation all the time. Don’t be ashamed to talk about the invisible ones too, that’s how the real healing happens.

 

 

 

 

Brittany Foster is from Cranston, Rhode Island. She enjoys writing, blogging, reading, and spending time with friends and family. Brittany is also passionate about advocating for herself and others. Over her 26 years of life, she has learned to live fully with her conditions. Brittany has learned the importance of acceptance and self advocacy, and she hopes to spread some much needed CHD awareness.  Brittany was born with a large VSD that caused pulmonary hypertension, as well as vascular anomalies, including a right sided aorta, aberrant and isolated subclavian artery, and a form of a vascular ring.  She has had open heart surgery, a vascular bypass surgery for subclavian steal syndrome, multiple heart caths and attempted ablations. Brittany also has a dual chamber pacemaker for sinus node disease/ tachy brady/ ventricular dyssynchrony. She is on full time oxygen therapy due to a genetic mutation that caused the structure of her blood vessels to be too small. Her motto in life is to keep tickin’ through it all! Brittany hopes you can do the same, no matter what life throws your way!

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.