Wellness – CHD and Exercise

With the brand new year, many of us are making resolutions to better ourselves and our lives. Exercising more is often at the top of the list! This week, Kathleen Baschen, an exercise physiologist at Ann & Robert  H. Lurie Children’s Hospital of Chicago, shares tips on how patients with CHD can get FITT. 

 

 

Your cardiologist suggests that you start exercising regularly, but where do you start? What type of exercise can an adult with congenital heart disease even do? You can do much more than you think! The key is to start small and build it up gradually as your body adapts.

 

We all have heard the benefits from regular exercise; how it improves lean mass in the body, lowers body fat and reduces stress.  But how can it help adults with CHD specifically? It can help decrease shortness of breath and fatigue in day to day tasks, it lowers blood pressure and heart rate and has been shown to reduce hospitalization stays (and duration of stays).  The benefits of exercise span from your head to your toes, with having positive effects for most systems in the body.  It sounds like a no-brainer, but developing and executing an exercise plan can be hard.  Here are some areas that will help you become more FITT, focusing specially on how to incorporate more aerobic, resistance and flexibility exercises into your weekly regiment.

 

Frequency: How often should I exercise? For a beginner, it is recommended to participate in aerobic exercise 3 days out of the week, resistance exercise 1-2 days out of the week and flexibility at least 2 days out of the week.  These can be spread out over the week or can be combined into 4-5 days to allow yourself breaks through the week.  For example, you could complete aerobic exercise and flexibility on the same day, or resistance and flexibility on the same day.  For those who have busy schedules, it can be more time efficient to complete two types of exercise in one day.

 

Intensity: How hard should I be exercising? For patients with CHD, using heart rate during exercise can be inaccurate due to medications or pacemakers.  For these patients, it is recommended to use the Borg Scale (see chart below) for aerobic activity.  During your warm up and cool down stages, you should be working from 8-10 on the scale (mild intensity). During the bulk of your aerobic exercise, the intensity should increase to 11-14 (moderate intensity). For resistance training, beginners can start with body weight or light hand weights. Increase your resistance every 2-3 weeks to progress strength. When stretching or performing other flexibility exercises, be safe and stretch to a point of feeling a tightness.

https://www.cdc.gov/physicalactivity/basics/measuring/exertion.htm

 

Time: How long should I exercise for? The ultimate goal is to exercise continuously for 30 minutes. When starting this program, start with any aerobic activity for 10-15 minutes and gradually increase your time over the course of 4-6 weeks.  Take breaks when necessary or complete aerobic exercises in an interval format to allow for periods of rest.  For resistance training, complete exercises in 10-15 repetitions and 2-3 sets.  If you exceed 15 repetitions, it’s time to increase your intensity! When performing flexibility exercises, hold stretches for 10-30 seconds and repeat stretches 2-4 times.

 

Type: What kinds of exercise should I be doing? Whatever you like to do! Aerobic exercises include running, walking, swimming, elliptical, biking, stair master, aerobic classes, Zumba and many more! Resistance training should consist of major muscle groups (upper body, lower body and core). There are countless exercises that you can do right at home with little or no equipment. Flexibility exercise can be anything from traditional static stretching to yoga.

 

Use this FITT principle when you are ready to start your exercise program and make time in your week to complete it.  Set a goal and stick to it. Find what you enjoy and do it! Remember to be safe when exercising. Check with your physician prior to starting an exercise plan, and if you ever experience symptoms while exercising, stop immediately or contact your physician if they persist.

 

Kathleen Baschen received her MS from Benedictine University. She is currently an Exercise Physiologist at Ann & Robert H. Lurie Children’s Hospital of Chicago, and her  focus is in cardiopulmonary diagnostic testing, pulmonary rehabilitation and cardiac rehabilitation.

The Promise of Research for CHD, and Our Responsibility to Advocate

Advancement in standards of care and best practices can only happen with research.  This week, Margaret King discusses the implications increased CHD research has on not only the community but society as a whole, as well as how important it is for each one of us to contact our representatives to increase research funding. 

 

 

The Promise of Research for CHD, and Our Responsibility to Advocate

 

This past month, I and a group of several other local heart families were treated to an astonishing behind-the-scenes tour of the Mitchells’ research lab at Children’s Hospital of Wisconsin, where we learned about the vital work they are doing to identify the genetic processes, risks, and factors in CHD. Just a few weeks prior, I also had the opportunity to attend Mayo Clinic’s Feel the Beat event, where the HLHS Program shares research updates with heart families. Both of these research programs are committed to improving treatment of CHDs across the lifespan, with the further goal of exploring targeted treatments based on individual risk factors.

 

Many leading pediatric cardiology centers are working tirelessly behind the scenes to make game-changing breakthroughs for current and future CHD patients. From stem cells to genetics, new medical devices and drug therapies, and of course, developing best practices for everyday care and management, research underlies almost all aspects of CHD care. It has enormous implications for the quality of life and outcomes CHD patients will experience.

 

As members of the CHD community, we can advocate for lifesaving research funding to our representatives, as well as urge our friends, families, neighbors, and colleagues to do the same.

 

Research Breakthroughs: A ripple effect

 

With 1 in 100 babies being born with a heart defect, there is an urgent need for research breakthroughs in preventing and optimally treating CHD of all kinds. However, studying individual types of CHDs can have tremendous implications that extend far beyond CHDs themselves. For example, understanding the possible cascade of genetic events that causes hypoplastic left heart syndrome (HLHS) sheds light on the broader process of cascades that cause a number of complex diseases, many of which have stumped researchers for decades.

 

If we can offer anything from targeted stem cell therapy to genetically-tailored drugs for one disease, it is just a matter of time until these technologies can be used to treat a wider and wider range of illnesses.

 

These cutting-edge research discoveries have great potential to alleviate suffering, not just in the CHD community, but across entire our society. They offer hope that we truly can “conquer CHD” and many other conditions that have proved to be extremely challenging to treat and manage using the life-saving advancements of the twentieth century. While the breakthroughs of the past were revolutionary, we now know that we can do so much more if we put resources into the proper channels.

 

Advocating for Research: Our responsibility

 

Researchers and doctors cannot shoulder the burden of advocating for research alone. The more we help advocate, the more time they can spend on research and collaboration. As it is, researchers often spend a lot of time identifying avenues of funding and writing grant applications for scarce funds, which takes valuable time from their work in the lab.

 

Many of us understand the importance of advocating to our political representatives, but do we talk to our friends, families, neighbors, and colleagues about how important it is to fund public research through institutions like the National Institute of Health (NIH)?

 

The NIH is the largest source of biomedical research funding in the entire world, but the process is fiercely competitive, with less than 20% of applications being approved at any level of funding. The number of projects the NIH can fund, as well as what level of funding projects receive, fluctuates with the national budget.

 

Advocating not only for increased funding, but stability in the NIH budget from year to year, is of utmost importance to make sure the lights stay on in some of our most promising, dedicated labs. After all, when the lights stay on at the lab, researchers can shed light on life-and-death health problems that affect many of us personally, and all of us as a society.

 

Research takes an enormous amount of time, especially when dealing with pediatric populations and small pools of patients. Simply gaining approval for a clinical study is a complicated process, because researchers have to demonstrate their studies will not cause foreseeable harm to their subjects. With today’s advanced technologies, the studies we need in key areas like genetics and stem cell research are expensive, and can even face ethical and political hurdles. Many of them have several phases, each taking years to complete.

 

When scientific and medical studies of repute are finally completed, they must undergo peer review to withstand scrutiny from professional colleagues in their field. After that, usually further studies are needed, and even the most promising results need to be duplicated elsewhere before becoming mainstream practice. Each promising finding is simply a building block for further findings, hopefully leading to an eventual “big picture.”

 

Sharing Research with CHD Families: An institutional necessity

 

Touring the lab at Children’s Hospital of Wisconsin, and seeing firsthand how dedicated the researchers there are to helping CHD patients gave me new hope as a heart parent, as well as an inspiration to keep advocating for all the lives that will be touched by CHD. It gave me hope that there is either a cure or a radical shift in how we understand and treat CHD on the horizon.

 

Many heart parents rely on social media posts from other parents in order to learn about important research findings and the results of the latest studies. Many of us only hear about this vital work after the fact, and have little means of learning about the latest, cutting-edge discussions and studies that are happening at our own centers.

 

I commend Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) for their dedication to sharing their current research with families. Their blog and Facebook posts, as well, as their annual Feel the Beat gathering, which includes a science fair and demonstrations of their current projects for all ages, is refreshingly accessible. The biennial Heart Parent Education Day at the Medical College of Wisconsin/Herma Heart Institute also strives to inform heart parents about standards of care in pediatric cardiology, as well as their latest programs for patients.

 

I urge all pediatric cardiology institutions to get the word out about the great work they are doing–whether through a newsletter, blog, social media page, or in-person events–to the CHD community. Making in-person events family-friendly helps heart parents attend these events without the stress and expense of finding childcare. When heart parents are empowered not only with knowledge, but also the hope of such inspiring research, they are even more motivated to spread the word to their social and advocacy circles–which is a win/win for everyone.

 

*** Update***

Upon reading this article, one of our legislative champions reached out to us to share that this piece  “really helps underscore the Bilirakis-Schiff CHD approps letter for FY18 (attached)!  Give yourselves (and our CHD friends in Congress) some credit. These lawmakers are after all, #CHDWise 😉

Bilirakis_Schiff_FY18CHD

This reminds us of the work our legislators are doing because of our advocacy efforts. Advocacy works!!!!

We’d like to thank the lawmakers who are already supporting increased CHD research funding, as highlighted in the letter, but we can’t stop!  We need to develop more legislative champions!! You can help by contacting your reps and letting them know you want them to support increased research funding. 

To learn more about CHD related legislation and how to contact Members of Congress from your state, check out PCHA’s Post on the Congenital Heart Futures Act

 

 

 

Margaret King is the mom to the 9- year old mighty K-man, a spirited boy with half a heart who is determined to live fully, and is married to the awesome heart dad, Shawn. A content marketer and writer in Wisconsin, her other interests include hiking and being outdoors, reading, and avoiding going down the thrill water slides her son is passionate about. She hopes to have a small goat farm someday

Recap – Patient Engagement Tools

Take a look back at our Patient Engagement Tool posts.

 

The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, has implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Transition Top 10 to Remember

As the seasons change, new milestones come and go.  This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home.  Dr. Aaron Kay, Director of the Adult Congenital Heart Disease Program at Indiana University Health, has the following Top Ten list to help ease the transition.

 

 

Comprehensive Single Ventricle Road Map

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 Tool – The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, and Janie Klug, MSN, have implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Many infants born with congenital heart disease (CHD) are transferred to the Cardiac Intensive Care Unit (CICU) immediately after birth or diagnosis for stabilization. As the mothers are still recovering from the delivery, many babies will undergo their first of many surgeries. Following surgery, these newborns are at risk for life threatening complications, require minimal stimulation, and around the clock medical care. It is very common for the medical team to ask families to remain hands off during this critical stage. The period of time spent in this phase of care is variable and for some can be several days to weeks. As the baby heals, the medical team is able to lessen sedation, remove lines and tubes, and gradually increase the amount of stimulation. This process of de-intensifying support can be lengthy and sometimes unpredictable leading many families to describe it as a roller coaster of emotions. Continue reading

Teen Topics – The Top 10 Things to Remember

As the seasons change, new milestones come and go.  This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home.  Dr. Aaron Kay, Director of the Adult Congenital Heart Disease Program at Indiana University Health, has the following Top Ten list to help ease the transition and cap off, for now, PCHA’s Teen Topic Series.

TOP 10 THINGS TO REMEMBER

  1. Congenital heart disease requires lifelong follow-up
  2. Where operations were completed
  3. How to find a copy of all operative reports as available
  4. The current list of medications, especially blood thinners and rhythm drugs
  5. If they have a pacemaker or not, and a wallet card
  6. Whether they need antibiotics before dentist, tattoos, piercings and similar procedures
  7. What restrictions their heart disease places on activities they can do, and how that can affect jobs, etc
  8. Need to maintain health insurance whenever possible
  9. How to find a new doctor that specializes in their disease if they have to move
  10. Who to call if they have any questions or concerns

 

 

Congenital heart disease requires lifelong follow-up

Many patients with CHD feel well at this point in their life, and in many cases, without significant symptoms, they may not see the need to see a doctor.  There is a common misconception that CHD can be “cured” (which is possible in a very small minority of lesions).  Some conditions require follow-up more frequently than others.  The “transition” period is an especially risky time for teens to become “lost to follow-up” as they may not necessarily know how to make their own appointments, and may not know how to find a new doctor.

Please discuss with your CHD provider who they should be seeing as they become adults, and if your child has not seen a CHD provider in the last 12 months, now would be a great time for a quick visit to make sure your teenager has a better understanding of their specific problem and how frequently they need follow-up.

 

Where operations were completed / How to find a copy of all operative reports as available

Ideally, your family would already have a copy of all the operative notes from all surgeries, catheter procedures, pacemaker implantations, and electrical studies of the heart.  A great deal of time and unnecessary testing can be saved if you have a copy of this information. Knowing the exact history of what was done, who it was done by, where, and when can really help a new CHD physician rapidly identify the best strategies for follow-up for your child.

 

For example, it is very helpful to know what kind of artificial valve, as well as what size of valve, was implanted. It can help a CHD physician understand how long to expect the valve to last without replacement, as well as the likelihood of being able to replace it in the cath lab, versus being able to follow by just echocardiography or cardiac MRI imaging.

 

 


The current list of medications, especially blood thinners and rhythm drugs

If your child is on Coumadin to prevent a blood clot, this is incredibly important information.Likewise, rhythm control drugs are important to know about. Many of these drugs will have interactions with other new drugs that are commonly prescribed, for example, antibiotics.  In some cases it may be important to consider getting a medical bracelet for your loved one in case of emergency.

 

 

If they have a pacemaker or not, and a wallet card

A wallet card identifying the manufacturer of a pacemaker or defibrillator is very important, especially in case of emergency.  You don’t want to think about bad things happening to your loved one, but if they suffer an ICD shock and are temporarily unconscious and unable to speak for themselves, emergency personnel with access to this information will be much better able to care for your child.

Additionally, as patients move, they often will need to have one cardiologist for the “plumbing” and another for the “electrical work.”  It can save a lot of frustration to know ahead of time that a patient requires appointments with both types of cardiologists, and at most centers we can make arrangements for your loved one to see both types of cardiologists at a routine office appointment on the same day

 

 

Whether they need antibiotics before dentist, tattoos, piercings and similar procedures

Although endocarditis is rare, the consequences can be very severe. Guidelines changed about 10 years ago, but overall whether or not a patient needs endocarditis prophylaxis is a matter of clinical judgment. I advise you to ask your physician or other provider about this.

 

 

 

 

What restrictions, if any, their heart disease places on what type of activities they can do, and how that can affect jobs, etc

 

If your child is not allowed to lift heavy weights due to their condition, they should be steered toward a job that does not require heavy physical activity.  For the most part, pediatric cardiologists already do an excellent job with this type of counseling.

 

 

 

Need to maintain health insurance whenever possible

Fortunately, at least for the time being, CHD patients can remain on their parents’ medical insurance until they are 26 years of age.  This policy gives ample time for most patients to have a plan to have insurance for themselves, although there are exceptions.

Without insurance, many preventable things can’t be appropriately prevented.  Virtually no one can afford open-heart surgery, catheter procedures, or other major heart procedures out-of-pocket.  If your family does not have private insurance, please ask your care team for resources to learn how to find alternative insurance through Medicaid or other similar State programs.

 

How to find a new doctor that specializes in their disease if they have to move

A great resource on the web is the Adult Congenital Heart Association clinic directory, which can be found here.  This directory can be searched by each state and virtually every large city currently has a program listed on the website.  Contact information to help you make an appointment is available in this directory.

You should also discuss with your CHD care team which doctor they would recommend.  For some very complicated types of congenital heart disease, it may be important to determine where to move based on the availability of appropriate ACHD resources.  Of course, in many cases, patients may still continue to “go home” during summer and college breaks and continue to see their original cardiologists.

I would recommend that if a young adult with CHD lives more than a few hours away from their hometown that they should have at least a one-time “checking in” appointment at a local hospital or clinic, so that they can have their chart on file in the electronic medical record of the nearby hospital, mainly in case of emergency. Also have a plan in place for where to be transferred in case of a serious medical emergency.

 

Who to call if they have any questions or concerns

This may be the most important issue.  The default option in case of emergency is the emergency department; however in many cases, a timely call to the right person can save an unnecessary trip as well as a lot of frustration. You should discuss with your current CHD care team who to call in the future, and when.  Many routine and unexpected questions are going to occur throughout your child’s life, so knowing who to consider a “medical home” is quite valuable.

 

 

 

 

Dr. Kay is the Director of the Adult Congenital Heart Disease Program at Indiana University/Indiana University Health.  He is trained in both Adult Cardiovascular Medicine and Pediatric Cardiology.  He is originally from Huntington, Indiana and has degrees in Spanish and Engineering from Purdue University.  He completed training in Internal Medicine and Pediatrics at The University of Cincinnati/Cincinnati Children’s Hospital, and completed a dual fellowship in Adult Cardiology and Pediatric Cardiology at Nationwide Children’s Hospital and The Ohio State University.

 

Teen Topics – Q&A: Your Questions Answered

Back in September, patients and families submitted the questions they most wanted answered. We caught up with members of PCHA’s Medical Advisory Board, at last month’s Transparency Summit, to ask those questions. Check out the videos below, featuring Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood’s answers on teen and young adult topics.

 

 

Dr. Brad Marino – Transition, Staying in Care, Protecting Your Health

Dr. Marino is an attending cardiac intensivist at Lurie Children’s Hospital. He is a Professor of Pediatrics and Medical Social Sciences at the Feinberg School of Medicine at Northwestern University, also serving as the Director of the Center for Cardiovascular Innovation in the Stanley Manne Children’s Research Institute.

 

 

 

 

 

Dr. Nicolas Madsen – Activity, Drugs & Alcohol, Related Conditions, Staying in Care

Nicolas L. Madsen, MD, MPH joined the Heart Institute at Cincinnati Children’s Hospital Medical Center in July 2012. He is the Vice Chair of PCHA’s Medical Advisory Board.

 

 

 

 

 

 

Dr. Michelle Gurvitz –  College, Tattoos, Contraception, and Transition.

Dr. Gurvitz is an assistant professor of pediatrics at Harvard Medical School and a staff cardiologist with the Boston Adult Congenital Heart program at Children’s Hospital Boston and Brigham and Women’s Hospital.

 

 

 

 

 

 

 

Dr. Erica Sood – Behavioral Health Topics/School Resources

 

Dr. Sood is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University.

 

 

 

 

 

Thank you, Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood, for your willingness to share your knowledge and experience!

 

Teen Topics – Medical I.D.’s and Taking Ownership of Your Care

PCHA begins its Teen Topics Series for the month of October. In this week’s post, American Medical IDs, introduces I.D.’s as one step toward  families helping their teens take ownership of their own care. Read further on the importance of involving teens in self -care and for a special offer . 

How Medical IDs Can Help Teens with Self-Care

 

 

Adolescents living with congenital heart disease are a rapidly growing population1. Most young people living with a heart condition will need a regular review throughout their lives and adolescence marks the start of a new transition from pediatric to adult health care.

Experts recommend that developing the right behavior and responsibility in self-care should start as early as possible during a child’s teenage years2. A successful transition is central to managing their health such as timely follow-ups with primary care physicians, managing medications, and preparing for medical emergencies.

Medical IDs for Teens with Congenital Heart Disease


Medical IDs are a piece of engraved jewelry that teenagers can wear to take charge of their health in case of an emergency.

 

National health organizations recommend medical IDs for persons living with health conditions including CHD3. In an emergency, congenital heart disease can be hard to identify, especially when a patient becomes unconscious or is unable to communicate.

Teenagers with heart conditions can wear their medical ID as a bracelet or necklace where important medical information is engraved. Each medical ID is unique and should include the wearer’s name, heart condition, such as congenital heart disease or cardiomyopathy, implants such as pacemakers or defibrillator, prescribed medications, and in case of emergency contact(s). 95% of first responders immediately look for a medical ID because access to medical information is vital for timely diagnosis and treatment.

A medical ID can help reduce a young person’s anxieties and offer assurance that they can get the right help when they need it.

 

Self-Advocacy and Raising Awareness  

Starting a conversation about congenital heart disease can be challenging for young people. They are at the stage where they need to belong or fit in with peers. Certain heart conditions can cause teenagers to have symptoms that are more visible than others, such as having blue tinted lips and nail beds or feeling tired4. At some point, teenagers living with CHD will need to communicate and answer questions that friends, classmates, and other people may have about their health.

Wearing a medical ID for congenital heart disease can open a conversation in a positive way about their condition and educate peers of how CHD should be taken seriously. It also opens opportunities for peers and older adults to show their support and advocacy for an adolescent’s health and well-being.

 

Helping your Teenager Choose a CHD Medical ID

Teens can have different views about medical alert jewelry despite its numerous benefits. The need to establish their identity and express themselves can influence their willingness to wear something that may not always reflect their style or personality. This is why it’s important to involve them in choosing a medical ID that they would love and be proud to wear. The good news is, medical IDs have gone a long way in terms of style.

Here are some considerations that you and your teen can make when choosing a medical ID.

1. Medical ID bracelet vs necklace – medical IDs should be worn at all times so go for the type of jewelry they’d be most comfortable wearing every day. One aspect to look at is a teenager’s regular activities such as attending gym class or participating in sports where wearing a necklace could be an issue. In this case, sporty or active medical ID bracelets are recommended.

Alternately, necklaces are preferred by teens who want to wear something that does not get in the way like a bracelet does. Consider how much flexibility is needed before making a decision on the jewelry.  

2. Durability and price – medical IDs range in price depending on the type of material used to make them. Silicone IDs are considered a practical choice by many for its affordability, plus silicone IDs are waterproof and can keep up with most type of activities.

Medical IDs made with precious metals like sterling silver, stainless steel, gold, platinum, and titanium may be more expensive but are valuable pieces of jewelry to own that could last a lifetime.

3. Style – teens prefer wearing medical IDs that reflect their personality and it’s possible with new medical ID styles! They can also choose to custom build their own medical ID bracelet or necklace by choosing from a variety of chain, clasp, and charm styles.

4. Custom engraving – no two people are the same so medical IDs shouldn’t be either. Choose a medical ID that you and your teen can custom engrave with their own name (or nickname), precise medical condition, and their emergency contact information.  

Engraving can be applied on the front and back of your medical alert jewelry. Look for unlimited engraving options so you don’t need to worry about counting the number of words or lines.

Medical IDs can help keep your teenager safe as they develop their own sense of responsibility and care for their own health. Having them wear a medical alert jewelry can let you enjoy peace of mind while giving your teenager the independence that they need.

 

PCHA Members Get 10% Off on American Medical IDs  

The Pediatric Congenital Heart Association (PCHA) has partnered with American Medical IDs to make medical alert jewelry more accessible to its members. Members can enjoy a 10% discount on all medical IDs (5% on gold) and for each purchase, American Medical ID will give back another 10% to support PCHA’s advocacy.

To enjoy this special discount, enter the discount code PCHA upon checkout or start shopping for medical IDs here.   

 

Resources:

  1. http://www.sciencedirect.com/science/article/pii/S0031395513001429
  2. http://www.paediatricsandchildhealthjournal.co.uk/article/S1751-7222(10)00155-1/abstract
  3. https://www.americanmedical-id.com/faq
  4. https://www.nhlbi.nih.gov/health/health-topics/topics/chd/signs

 

Mental Health – Q&A with A Mental Health Expert

We return, with the first September Blog, to PCHA’s Mental Health Series. Child and adult psychotherapist and CHD Patient, Austin Wilmot, helps demystify mental illness as he answers questions often associated with those affected by CHD.

PCHA: Thank you for taking the time to share with PCHA about mental health and congenital heart disease. As a psychotherapist and someone with personal experience in the CHD community, we are interested in your perspective on the kinds of issues that patients and families deal with. As you know, we recently had two blog contributions—one written by a 26-year-old woman living with CHD, and another written by a mother of a 5-year-old child living with CHD. Both of these are a part of our mental health series, and it was clear that medical trauma and PTSD was a significant topic in both pieces.

Mr. Wilmot: Thank you for reaching out to me to contribute to such an important conversation—one that I think is beginning to happen more and more. I am fortunate to be able to hear and understand many perspectives and experiences from those in the CHD community. As I’ve been thinking about this interview, there comes to mind a particular quote I would like to start with: “Every adult with CHD was once a child with CHD.” I thank the Adult Congenital Heart Association for their powerful reminder of this truth, and I think it opens the door for thinking critically about how early experiences—especially, for our purposes here, the traumatic effect of severe, serious, painful and chronic medical conditions and procedures—impact future development and mental health.

You know, there was a time, not too terribly long ago, when the belief that “babies don’t feel pain” was held in the medical community. An opinion article written for The New York Times titled, “Why Infant Surgery Without Anesthesia Went Unchallenged”, was published in 1987 and sought to draw additional attention to the alarming trend of indifference to pain. Although the practice of withholding anesthesia and postoperative pain relief from babies and small children was essentially done away with by the end of the 1970s, ideas about early emotional trauma stemming from these experiences and the psychological aspects of prolonged hospital stays and medical interventions have only recently, in some arenas, gained serious consideration. Even so, there remain profound gaps in education and awareness by professionals, patients and families. It becomes painfully obvious when one listens to professionals speak on mental health with CHD-related communities without mention of the word “trauma” or when I hear advice akin to how someone can just change their thinking to feel better. In my experience, feeling better is not about willpower. It is about treatment. As you can see from your previous two blog contributors, there is much to say about these traumatic experiences from the parental, familial and patient perspectives that have had an enduring, pervasive effect. I imagine that readers of this blog also have much to say, as well. I invite readers to email me (aw@austinwilmot.com) with their own associations that come to mind about medical trauma in your experience (across the lifespan). Of course, this is voluntary, confidential and would never be linked to you.

In terms of the national discussion intersecting mental health and congenital heart disease, I find it helpful to look at the literature. A recent search of “mental health congenital heart disease” on PubMed (the National Institutes’ of Health literature database) revealed a total of 198 articles total, 92 articles in the last five years—27 of those in the last year. The phraseology of “medical trauma” is becoming more utilized in the literature. A search of PubMed revealed 78 papers ever published with that particular phrase, 24 in the last five years, and less than five that directly relate by search to “congenital heart disease mental health”. A search of PEP-Web, the psychoanalytic literature database, shows 20 papers with “medical trauma” in the paper and only two with it in the title. There was a paper in 1976 and then not much until the 1990s. All of this is to say that the impact of medical trauma and medical intervention in early life (infancy) and throughout the life of a person living with CHD is profound. However, as the most common form of trauma, medical trauma is the least discussed in the literature.

Directly intervening at the level of the inner, emotional world of the child living with congenital heart disease is often avoided or forgotten by professionals and parents or caregivers, alike. Many mental health providers do not know how to tread into helping children with chronic medical conditions, and many parents are afraid or do not know how to talk about such feelings or realities in a developmentally appropriate way. Such conversations are frequently ‘put off’ for later, in the hope that the child can resolve or ‘get over’ anxieties that seem premature or unfounded based on the child’s present medical status (e.g., being alive, having survived). In this way, feelings can become minimized and psychological symptoms can result in manifestations of emotional and behavior problems. It is known in the literature that the prevalence of anxiety, depression and trauma-related disorders is increased in the CHD population, and that addressing emotional distress earlier than later benefits the child and family throughout the lifespan.

 

PCHA: Why has the awareness of medical procedures as a form of trauma been minimal?

Mr. Wilmot: Going off of your word “minimal”, it is something that I believe has been minimized, and at times, denied. “These medical procedures and operations have to happen anyway, so what’s the big deal when it can be talked about later?” – One might ask. Well, there is quite a bit to talk about. So, let’s begin by talking about medical trauma.

Caregivers and medical personnel are well-meaning. However, just because intent is good does not mean the impact follows suit. These well-meaning caregivers and medical personnel may rather see themselves as only good, carrying out helpful acts, instead of as perpetrators of forced, violent, torturous or intrusive acts carried out without consent of the patient. If you really think about the experience of the infant or child, a bodily and psychic invasion is also a valid experience that must be seriously taken up. While good and helpful these individuals are, operating and holding the patient in mind from that first perspective alone will leave the infant, child or adolescent quite alone with another experience entirely—based on their individual, developmental level. For instance, early surgeries can be experienced as attacks on the body, caregivers felt to be in collusion with allowing such attacks and torture on the body at the hands of medical professionals—people that are said to help, but also cause an experience of pain. It takes a particular degree of cognitive and emotional development to be able to understand that the person causing pain is actually doing a helpful, perhaps life-saving act. Additionally, traumatic aloneness can pervade during short- and long-term hospital stays and isolation. “Is this an act of punishment on me?” “I am bad.” “The world is dangerous.” “I am dangerous.” “I am not safe.” These are examples of personal, internal meanings that can become embedded as a traumatic, overwhelming experience is reckoned with by the mind and brought into relation with self and others. Again, this depends on the developmental level and unique set of internal and external resources of the patient.

As an aside, circumcision is an example of routine procedure that did not begin with concomitant interest in understanding the inner, psychological impact of what that kind of action could effect on the psyche. In that arena, there is greater dialogue and consideration given to the mental and emotional impact of having someone else decide what is done with someone else’s body. Since intervention in the case of CHD is almost always required to prevent death, this can provide another reason as for why the impact of intervention is not thought about. “One had to have surgery to survive, so one must be grateful and happy to be alive.” Or, “you would have chosen to have surgery anyway, so just get over it.” If those lines of thinking are the only allowed stance, then there can be whole swaths of emotional experience blocked from exploration or expression. This can leave someone emotionally deadened, disallowing feelings in a similar way to suffering with survivor’s guilt. “I survived such and such an experience, or survived longer than so and so, so for me to enjoy more pleasure doing or pursuing such and such as a means to thriving more would be ungrateful, selfish and impulsive“. That line of thinking, again, forecloses the exploration of one’s own full spectrum of feelings and capacity for aliveness.

As I related to earlier, the idea that babies feel and remember pain (physical and emotional) has had all sorts of resistance to it. Firstly, it can be a difficult idea to bring into one’s mind and think about—it forces one to think critically about past, present and future relational experiences involving baby and interventions that have been or will be medically unavoidable, even routine ones. This can be hard to do when parents are traumatized themselves and/or are trying to metabolize so much of what is happening already with their newborn. The idea can itself be paralyzing for some caregivers that find it challenging to make the move from overwhelming guilt anxiety and shame (believing that they are bad parents for having an infant with CHD, feeling inadequate as they are forced to hand over their baby to those that can provide what they cannot, as well as various distortions in thinking such as construing the birth of this infant as punishment that they are due, etc.) to constructive, useable concern and curiosity about the inner world of the infant (how to go about repairing the effects of stress and trauma on early attachment, for example, in later psychotherapeutic consultation). Secondly, having an awareness for just how influential early life is on future development is something that is largely easier said than done. Why? A lot is happening at an unconscious level in early life that lays a foundation or template for the development of personality and relating. Depending on the level of psychological mindedness of the parents and capacity for reflection on their own histories, it can be a tall order to cultivate an empathic stance grounded in seeking an understanding of the inner world of the infant, a world that seems far removed from the immediate adult experience. “Well, I’m fine, I don’t have memories of being an infant and I made it through hard times. And, baby has shown how strong he/she is by being such a fighter and heart warrior”. – One might hear. This kind of response involves a difficulty in seeing the infant as a separate being with a separate mind, as well as an identification with the aggressor wherein the parent repeats their own past, infantile or childhood experience of being unattended to while in a state of distress, perhaps by their own parent. Professionally, I do not deny a healthy resilience, but I also do not deny the reality of emotional scars that may seem initially invisible.

It is important to note that just because the mind of an infant does not yet have access to elaborating experience with words does not negate the existence of an inner world with meaning-making processes that are working to digest moment-to-moment interactions and external stimuli—a baby that is trying to make sense of its environment and the information coming in from all senses. A baby is very vulnerable in his or her state of absolute dependency. When baby cannot be protected from harm, even due to well-intentioned, necessary medical intervention, the protective parental environment fails, yielding overwhelming affective states such as extreme anxiety and helplessness. This is where stress becomes trauma—when the intensity of the frightening events become unmanageable to the extent that physical and psychological integrity is threatened. These states and adaptive responses to stress can become traits, maladaptive coping patterns and consolidate into a particular attachment style, for example. An infant has then appropriate reason—danger—to resort to the use of extraordinary intra-psychic defenses to protect against such profound helplessness and other feeling states that would be overwhelming, but these come at a psychological cost. The use of these defensive strategies over time can contribute to future psychopathological outcomes—problems that can manifest in development with various symptomologies without proper psychotherapeutic treatment. I will not go into detail about the above here, but know that emotional muscle can be built at any age to address the need for mastery of feelings and promote restoration to progressive psychological development. This I will explore with you later.

It is in the mind of an adult, however, that I have us consider the impact of defensive thinking, namely “magical thinking”, in the context of how medical trauma becomes minimized or denied. Everyone uses magical thinking at different times, especially when stressed, to deal with realities in life that if one were to become too aware of would lead to feelings that one may not have the capacity to cope with or wish to think about. An example of this is someone who has certain rituals or routines they use to self-soothe—actions that when carried out provide a degree of relief from anxiety, but are based on an illusion of control, a fantasy that they have more control over circumstances than they really do. “If I avoid stepping on the cracks in the sidewalk, then all will be well and this bad thing won’t happen.” When one is presented with a stressful situation, traumatic perhaps, there is a strong pull to regressively deal with circumstances through magical thinking and action. We see an example of this in how CHD has sometimes been talked about. There have been many discussions and confusions around a “fix” for CHD—many patients even falling out of care based on a perceived understanding that they are “fixed”. I would contend that some of this is due to the actual wish for a “fix” and magical thinking that eliminates CHD in the mind—pushing it out of awareness. This obviously is not good because CHD continues to exist and may make itself known in crisis form when the individual is forced into emergent medical consultation. This, unfortunately, is not uncommon as some people reaching out to speak to a Heart Ambassador with the Adult Congenital Heart Association do so because of a change in their medical status—individuals who have waited as long as possible, until there is trouble, to reach out and (re)start thinking about their CHD. Of course, improper medical advice and misinformation is also a factor in thinking one is “fixed”. Additionally, some medical professionals (physicians, surgeons, etc.), idealized and imbued by their patients with a god-like omnipotence can, due to their own psychological conflicts, participate in a collusion by fulfilling the parental wish for nothing less than “rescuing my baby from death and fixing their heart for good”. The words doctors, surgeons and other professionals use during these intimate, critical moments and throughout care are incredibly meaningful and must be attended to carefully as pressures and expectations can run high. Fortunately, more medical knowledge about CHD has reduced the chance for gaps in understanding CHD as a lifelong condition warranting lifelong care. However, there are stories of cardiologists not specialized in CHD care that have contributed to problems in how their patients think about their condition and future. As you can see, transition from appropriate pediatric to adult care is an important topic that has psychological, as well as physical health implications. We can explore that later, too.

In general, I think that a collective form of magical thinking can become employed to deal with these truly traumatic realities for all involved. A delusion of omnipotence manifests—a distortion of reality, a falsehood, is clung to that control is possible in the face of shear uncertainty, helplessness and powerlessness—commonly the very feelings felt by parents and many medical personnel experiencing their own reactions and feelings in the provision of care. “Just take him home and watch him flourish”, or other such remarks (this one made post-heart surgery and after two weeks of NICU care with emergent crises), although incredibly well-intentioned and reflective of significant medical progress, leaves out reference to how that infant will remain, proverbially, on the heart monitor and in a psychologically traumatized state unless attunement is brought to the infant’s inner state of dysregulation.

 

PCHA:  How can a parent best support the mental health their infant, child or adolescent living with CHD?

Mr. Wilmot: When I work with caregivers seeking help with their infant, child or adolescent, I conduct a thorough assessment of their situation and take a developmental history through multiple sessions of contact. The issues, strengths and challenges within a family system and within each individual is always unique. That said, I find that a deep need for understanding and a curious attitude is key in parents being able to parent thoughtfully and effectively and enhance their connection with their loved one. I frequently talk with the parents I work with and individuals I present to about building emotional muscle in themselves and facilitating the same in their infant, child or adolescent. Different emotional muscles are called upon at different stages of development for both caregiver and child. One emotional muscle I will provide an example of has to do with naming feelings. There is a saying that “if you name it, you can tame it.” This is important because words are a way of bringing feelings into the mind, in contrast to acting feelings out through the body (e.g., an eating disorder, aggression, self-harm, etc.). Already being such a focus of attention and intervention, the body of a person living with CHD can be vulnerable to being used as an object to store or attempt control of feelings—the body (and physical behavior) becoming a primary way of dealing with intolerable emotions and conflicts rather than through the use of words in relationship. This is where somatization, or the conversion of psychological conflicts can occur into physical symptoms. On more than one occasion, I have seen Facebook posts from worried parents of children with CHD wondering why their child is checking their pulse so much, seemingly worried and appearing anxious. Frequent commentary proceeds with concern about the child’s physical wellbeing, back and forth conversation about the latest appointments and the eventual decision about whether or not to call the doctor. What I would like to posit is that children can also express and signal to us their discomfort with feelings through attention to their body. It is the way so much attention has already been garnered, so what’s a child to do but utilize their behavior and body to attempt communication when words, for one reason or another, are not an adequate channel of communication at the time. The idea that this child may not be trying to communicate a physical problem, but an emotional one merits attention, slowing down and spending some quality time together.

Recently, a parent had asked about when the appropriate time was to start talking about their child’s scar. Common questions revolve around how to talk about CHD at an appropriate developmental level with one’s child or adolescent. As you can imagine, when we don’t know the answer to something we end up left to our own imagination to fill in the blanks. Sometimes the imaginative “filling in” can be more catastrophizing or anxiety-inducing than if a reality-based conversation had taken place to provide information. This occurs with children and adolescents, as well—and many thoughts and fantasies can run wild that create anxiety. Providing education about CHD, making oneself a “safe playground for all feelings” and talking about fears and questions that arise are an integral component of creating the conditions for building emotional muscle.

 

PCHA: When would a parent need to seek professional consultation?

Mr. Wilmot: Parents present for psychotherapeutic consultation for infinite reasons—many times symptoms and problems are in mind, while other times a desire to act preventatively is active. Sometimes the treatment does not result in a need to see the child for quite some time or at all, as parent work becomes a primary focus. Eventually, based on the unique situation presented, I offer impressions and recommendation for individual treatment of the child or adolescent, if appropriate. Additionally, many parents find their own therapy crucial, as it can also help address any “ghosts in the nursery” that may be impinging on their ability to parent and foster progressive psychological development. Unfortunately, stigma around seeking and obtaining mental health services is still present in our society. However, this should not prevent anyone from the care they deserve.

 

PCHA: What can be done throughout the lifespan to minimize the potential for traumatization due to medical intervention and living with CHD?

Mr. Wilmot: That is a good question. As I mentioned previously, thoughts and fantasies in the mind of the child and adolescent can run wild when unknowns and uncertainties exist. This is especially the case when thinking about upcoming doctor appointments, surgeries, concerns and fears about the future and anything with potential to overwhelm or scare. Not talking about these things, hoping for the best and surprising or lying to a child or adolescent with matters concerning their body and health does not bode well. Whether it is preparing a child or adolescent for a routine doctor appointment or a major surgery, there are steps that can be taken to reduce the potential for traumatization. Having time to think about, sit with and explore feelings, thoughts and fantasies through talking, drawing or playing are avenues to accessing the inner world. Sometimes visiting the hospital and touring can be helpful with the ability for the child or adolescent to ask questions and gain a sense of understanding and familiarity. Parents should not be fully burdened by the task of preparing their child or adolescent for surgery, as medical personnel collaboration and engagement is also critical. There is much more to say here, but know that there is always room to reduce potential for trauma no matter the age or circumstance. Professional consultation is warranted.

 

PCHA: What can you say about the siblings of a child or adolescent with CHD?

Mr. Wilmot: I am so glad you asked. You know, the psychological and emotional impact of having a sibling with CHD is getting more coverage. It is an incredibly important topic. Growing up with a sibling with CHD can be traumatic. It also presents challenges in family and sibling dynamics that can be difficult to manage, but are ripe for more emotional muscle building. For example, what is a parent to do with feelings of envy, jealousy, hatred or anger between siblings. One example is in how a sibling may feel envious of the other’s attention received by their CHD, feeling like they are not loved. At the same time, the child with CHD may react aggressively, angered that the sibling is “normal” and can participate in more sports and activities than they can. Resentments and complicated feelings can impinge on individual and family functioning. Ignoring the reality of sibling feelings about CHD is problematic. My experience hearing siblings talk in groups I have led that facilitate the expression of all these varied thoughts and feelings at heart camps has shown that there can be much under the surface that deserves a safe space to come up. Again, professional consultation is just as warranted as for the child or adolescent with CHD.

 

PCHA: What is the matter with transitioning to adult congenital care and how is this a psychological issue, as well?

Mr. Wilmot: Taking responsibility for one’s own body and health is a developmental achievement. As I mentioned before, the dropping out of care of adult CHD patients over time can be related to whether or not one can hold oneself responsible and function autonomously and also how prepared one is in their understanding of their condition. Important relationships exist for many CHD patients from infancy through young adulthood—the pediatric cardiologist, surgeons, nurses, etc. Feelings about these very important people can have significant meaning and must be felt and talked about in order to move forward on an internal, developmental level with regards to transition. Also, parental engagement has been a norm in the maintenance of health with providers—parents as advocates for child and adolescent. Transitioning to adult congenital care can be like going away for college—a time to spread one’s wings and gain competence and mastery with getting to classes on-time and being an independent, capable advocate for oneself. Replace classes with appointments and this can be an example of some transition experiences. There is much to say about transition, but ultimately there is growing awareness that one cannot just be referred out to an adult cardiologist through an abrupt termination in pediatric care because an age limit has been reached and a letter sent out. Feelings, relationships and the process must be respected for a successful transition in care.

 

PCHA: Since you have experience developing programs for CHD camps, what can you say about the CHD camp experience overall?

Mr. Wilmot: CHD camps are special places. As a prerequisite, camps designed for children and adolescents with congenital heart disease are staffed with the necessary medical professionals and oversight to provide a foundation for a safe experience. As is common, camp time includes myriad activities. With a CHD camp, there is cause for additional thinking about the allocation of time. As one camp coordinator for a CHD camp put it, “I feel like we are designing out camp to make sure the kids are ‘entertained’ the entire time and we probably are not allotting enough time for them to really take time to think and reflect with other kids who are similar to themselves.” I believe that it is a concern that often goes overlooked even with the best of intentions. Without giving the space needed to slow down and have time with feelings, we would be propagating a message that scary things cannot be talked about, at the one time each year that CHD kids can come together. The same camp coordinator continued with, “I feel like we, as the people putting camp together, are afraid to venture out and do something we aren’t familiar with and don’t really know how to pull it off (and I for sure put myself into that).” I think this is very helpful to acknowledge and think through. To not dedicate time to what is going on inside is like telling a child to come play with other kids who have gone through and live with things like you (some scary), but we are not going to talk about how any of that feels to you.

 

For some, going to camp is an emotional confrontation, and for others going to camp is an integrated experience that offers an opportunity for connection and a chance to feel more understood. In both cases, there are feelings ripe for expression via art, writing, talking and other play within the safe container of a professionally facilitated psychotherapeutic group. Ways of connecting that are accessible to both the extroverted and introverted child can help to reach each camper’s inner world. A psychotherapeutic group experience can provide a space for “big feelings” to become more understood and help the child or adolescent living with CHD come to a new level of mastery of their own feelings, building fundamental emotional muscle. Camp offers a unique time and place to touch on the emotional needs of each camper with each of their separate, yet connected experiences living with CHD. In my consultation work with CHD camps, I advocate for the time needed to directly intervene on these emotional levels.

 

PCHA: What are your thoughts on current research trends regarding CHD and mental health?

 

Mr. Wilmot: A recent article I corresponded on put forth a conclusion that quality of life was very positive for CHD children and adolescents. There was not a mention of trauma in the article and the results were based solely on self-report by children and adolescents. Let me start by saying that the need for this kind of research is huge. However, what I want to also say is that the use of self-report for research purposes has serious limitations. Children and adolescents may not feel safe to answer truthfully (“What if mom and dad see, and they think I need to go to another doctor?”) or questions may be too standardized to truly assess the full psychosocial circumstance. Other issues exist with self-report, as well. Individualized inquiry through interviews with mental health professionals over time, I think, is a better framework for obtaining in-depth information about the quality of one’s life and state of mental health. Quantitative assessment alone misses data, especially since we are creatives of narrative with complex inner-workings. The interviews can also gain a more comprehensive evaluation of issues (e.g., asking about body image, physical attractiveness concepts, etc.) in other domains not asked about on the brief self-report instrument that would also impact quality of life. More research is needed on the intersection of mental health with the CHD population—quality over quantity, in my opinion.

 

 

PCHA: Mr. Wilmot, we appreciate your time. Thank you for answering these crucial questions. I think you have shed a light on many important issues to the CHD community.

 

Mr. Wilmot: Thank you.

 

Austin E. Wilmot, M.S.W., L.C.S.W., a national expert in the treatment of children, adolescents and adults living with congenital heart disease, is a child and adult psychotherapist and consultant in clinical practice in St. Louis, Missouri. Mr. Wilmot earned his Master of SocialWork from the George Warren Brown School of Social Work at Washington University in St. Louis, and completed post-graduate training at the St. Louis Psychoanalytic Institute. He is also a consulting psychotherapist for the Washington University School of Medicine Adult Congenital Heart Disease Center. Mr. Wilmot has worked with parents, families, children, adolescents, adults and professionals within the congenital heart disease (CHD) community. He also has experience consulting with CHD camps and developing programs that address the unique needs of children and adolescents living with CHD. He is active on the local and national level through speaking, teaching and consulting. He frequently presents on the topic of medical trauma and other mental health issues—his upcoming seminar for professionals, “When helpers hurt: Understanding and working with medical trauma”, is scheduled for October 2017 in St. Louis, MO. More information about Mr. Wilmot’s practice, including his contact information, can be found at heartchd.com and austinwilmot.com.

Making sense of congenital heart surgery data

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

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

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

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

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

 

A little bit of background

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

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

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

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

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

 

The STS data

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

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

 

Surgeons

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

 

Outcomes

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

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

 

Timeframe

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

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

 

Data Presentation

The information is presented in two ways on the website:

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

 

STAT categories

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

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

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

 

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

 

Mortality Data

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

#/Eligible and Observed:

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

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

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

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

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

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

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

 

Expected: 

This column lists the expected rate of death.

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

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

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

 

O/E (95% CI):

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

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

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

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

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

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

 

Adj. Rate (95% CI):

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

 

Star rating

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

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

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

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

Example –

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

1 star                                       1.4 (1.1 – 1.6)

2 star                                       0.8 (0.7 – 1.1)

3 star                                       0.6 (0.5 – 0.9)

 

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

 

What does all of this mean?

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

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

 

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

 

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

 

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

 

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

 

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

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

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

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

 

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

 

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

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

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

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

 

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

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

 

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

 

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

 

How can I use this data?

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

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

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

For more information, visit www.conqueringchd.org.

 

Authors:

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

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

Acknowledgements:

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

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

 

School Intervention Series: A Complete Resource Guide

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

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

Proactive Planning

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

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

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

Clear and Consistent Communication

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

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

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

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

The Power of Effective Support Services

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

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

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

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

Complete School Intervention Resource List

Proactive Planning

Communication

Services


SAMSUNG CAMERA PICTURES

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