Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

Congenital Heart Disease Legislation

 

In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)

Current Cosponsors (Updated 11/12/17)

Senate Cosponsors – Date Cosponsored
  • Whitehouse, Sheldon [D-RI] – 4/7/17
  • Stabenow, Debbie [D-MI] – 4/7/17
  • Klobuchar, Amy [D-MN] – 4/7/17
  • Baldwin, Tammy [D-WI] – 4/7/17

House Cosponsors – Date Cosponsored
  • Pocan, Mark [D-WI] – 3/28/17
  • Connolly, Gerald [D-VA] – 3/28/17
  • Soto, Darren [D-FL] – 3/28/17
  • Evans, Dwight [D-PA] – 3/28/17
  • Holmes-Norton, Eleanor [D-DC] – 3/28/17
  • Murphy, Stephanie [D-FL] – 3/28/17
  • Swalwell, Eric [D-CA] – 3/28/17
  • Loebsack, Dave [D-IA] – 3/28/17
  • Stivers, Steve [R-OH] – 3/28/17
  • Webster, Daniel [R-FL] – 3/28/17
  • McMorris-Rodgers, Kathy [R-WA] – 3/28/17
  • Abraham, Ralph [R-LA] – 3/28/17
  • Guthrie, Brett [R-KY] – 3/28/17
  • Bost, Mike [R-IL] – 3/28/17
  • Mullin, Markwayne [R-OK] – 3/28/17
  • Nolan, Richard [D-MN] – 3/29/17
  • Fitzpatrick, Brian [R-PA] – 4/3/17
  • Collins, Chris [R-NY] – 4/4/17
  • Velazquez, Nydia [D-NY] – 4/6/17
  • Ros-Lehtinen, Ileana [R-FL] – 4/20/17
  • Sessions, Pete [R-TX] – 5/3/17
  • Griffith, Morgan [R-VA] – 5/19/17
  • Ellison, Keith [D-MN] – 5/23/17
  • Moulton, Seth [D-MA] – 6/26/17
  • Cardenas, Tony [D-CA] – 7/13/17
  • Walberg, Tim [R-MI] – 7/13/17
  • Meehan, Patrick [R-PA] – 9/5/17

Are your legislators on the list?

If not email them, today!!!


Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.  First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress.  It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each.  This is anticipated to be reconciled later on in the bill passage process.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Together, we will CONQUER CHD!


Sample email:

Send an email, today!
Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov or www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Senator/Representative XYZ,

As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

New Diagnosis – One Day At A Time, A Heart Mom’s Story

As we approach Heart Month PCHA begins its series on New Diagnosis. This week, Heart Mom Alexandra Frost shares with us the story of her daughter Emersynn’s  diagnosis in utero and how she learned to take the news and life with CHD day by day.

 

 

It all started when we went for our 12 week NT scan, where they measure the fluid behind the neck. The doctor came into the room and we could feel the discomfort. He said that our baby’s fluid behind the neck was measuring double the norm. This was a red flag for either Down syndrome or a congenital heart defect (CHD). He sent me to get blood work the same day. Ten long days later, I got the results that our baby tested negative for Down syndrome and the other genetic stuff they tested for, and we found out she was a girl! We were so excited and thought we were in the clear since we have no history of CHDs on either side of our family.

Fast forward 8 weeks when we went for our 20 week anatomy scan. When the doctor came in, we got that same feeling. She said, “All organs look good, except her heart. Unfortunately, she has a heart defect which puts you in that 1%.” It was one of the worst days of our lives. My world shattered as I tried to process these foreign words – “congenital heart defect.” They weren’t quite sure how severe her defect was at that point, which is why we were referred to a high risk OB and then a pediatric cardiologist.

When we saw the pediatric cardiologist, he broke the news that she does indeed have a complex heart defect which is VERY rare. Once again, my heart sank to the floor after hearing this news. Emersynn has congenitally corrected transposition of the great arteries (ccTGA or l-tga), a large ventricular septal defect (VSD), pulmonary stenosis (PS) and dextrocardia. Out of those one percent that end up with a heart defect, .5 – 1% end up with ccTGA. That is how rare the defect is! Only 5,000-10,000 people in the US have this condition! After leaving the cardiologist that day, my husband and I looked at each other in the car and looked back down at the paper that had a drawing of our baby’s heart. We were so confused and wondered if we would ever be able to understand the anatomy of our little one’s heart. Overwhelmed was an understatement.

 

 

 

 

 

 

 

 

 

We live in Fort Myers, and, unfortunately, the hospitals around here are not equipped to deliver babies with severe heart defects. We were given the choice to deliver in Miami or Tampa. Although Emersynn’s ped cardiologist (who is exceptional) is in Tampa, we decided to deliver in the Miami area at Memorial Regional Hospital (connected to Joe DiMaggio Children’s Hospital). This decision was made through countless hours of research after finding out (this is how I essentially coped with the news). During our research we came across a Facebook page for a boy that has the same defect. I reached out to his mother who led me to a private Facebook group for Emersynn’s particular defect. Only immediate family or the person affected is allowed to join this group. It turned out to be an extraordinary group that helped us tremendously! We found out, through this group, that a top surgeon for Emersynn’s defect was mentoring at Joe DiMaggio Children’s Hospital, and was there about once per month. This made us feel comfortable, as her defect is so rare and there are only a handful of surgeons that are successful in doing the major surgery that she will eventually need in the future.

 

We were told throughout the pregnancy that Emersynn would need a shunt within a week of birth, as they thought she wouldn’t get enough blood to her lungs. She would then need a major surgery called the double switch down the road. I ended up delivering on November 22, 2016 and she was a big baby, which defies odds already! They watched her closely in CICU for three days as her PDA closed. Once it was closed they monitored her saturation. She proved to be miraculous and was sent home on day 4, with no surgery and thriving!

Emersynn just turned one year old and has not had any surgery thus far! She is defying all odds and doing SO amazing! She is growing well and hitting all of her milestones on or before (!) she is supposed to! This little girl amazes us more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior! Emersynn will need a major open heart surgery in the next few years. The doctors say her body will tell us when it’s time. This is a very risky surgery and hard to put her through when she is currently doing so well. We know she will eventually need this surgery to continue to thrive and give her the best life. Some days, I hardly think about her heart defect, and other days it totally consumes me. It’s something I wouldn’t wish on anyone. However, we wouldn’t change Emersynn for the world. We know that we were chosen to be this sweet girl’s parents, because we could handle the challenge. Through this experience, we have learned to take it one day at a time!

 

 Alexandra Frost currently lives in Fort Myers, FL. She is originally from Long Island, NY and graduated from Villanova University in 2012. Alexandra has been married to her high school sweetheart for almost 2 years. She juggles real estate and being a mommy to a very adventurous one year old heart warrior. Alexandra and her husband are excited for their second baby on the way and know Emersynn is going to make a great big sister!

Wellness – Balance

In the latest post in the Wellness Series, Megan Horsley, heart mom and Pediatric Dietitian at Cincinnati Children’s Hospital Medical Center, discusses how to find balance with your nutrition.

 

 

Have you ever felt off balance? I am not specifically talking about when you were walking on a balance bean during gym class or gymnastics; or stretching your quadriceps after a run; or learning how to ride a bike for the first time. I am talking about BALANCE as you journey through life. I can assure you, from heart mom to heart mom and heart dad to heart dad, having your child affected by heart disease creates imbalance in your life at times. I think this unevenness, even though challenging in the moments, help us to grow into better individuals in the long run.

What about when you ignore your alarm and wake up late, panicking because you have to get to work, an appointment, or make sure the kids make the bus, or let the dog out before he or she pees on the floor. Then like dominos, the rest of your day may seem off. You either eat late, skip eating or choose something half satisfactory and unhealthy and then before you know it, it is dinner time when you stop and think about your eating and drinking choices throughout the day!

Well, I often think of one’s health and nutrition in the same manner. Sometimes, our eating and healthy behavior is “off balance” and we need to get it back into check. At times we are not mindful of what we are entering into our mouths or how it will affect our body’s long term. We put the nutrition of the ones we love and care for every day before our own nutrition. This is being a parent, right!? Maybe, some of us are better at it than others but no matter what we can all use reminders of how to be more mindful to eat healthier.

I believe mindful eating is vital to maintaining a healthy weight and eating behaviors. Listen to your body. Slow down. The more mindful we are, the more balance we have around our nutrition and diet. It is especially important to practice around the holidays, celebrations or social events. For example, have you ever actually counted out the number of chips/crackers the label says is a serving? or measured out the appropriate amount of salad dressing or cheese for your salad?  This practice encourages more self-education but you also get to visually see what a portion size looks like for that item. Try it for the next food you eat! Learn what normal portions look like for foods. Read those food labels! They have been updated this year and are more reader friendly. This includes even those calorie-dense fluids like juice, Kool aide or, yes, alcohol. I think you will be surprised. Conscious awareness will go a long way in healthy decision making. You may find yourself eating from smaller plates or drinking from thinner glasses. Use mantras to keep you aligned with your goals. One of the mantras I use to remind myself of mindful eating is: Eat, Drink, Be Mindful.

Another contributor to a healthy diet is pre-planning. We are busy people and on the go. If meals and snacks are not planned, it is easy to give in to fast food or limit food groups when grabbing something quick. This can lead to overeating or uncontrolled snacking. Take a few minutes to pack ahead some healthy snacks so you are ready to fuel yourself as well as your family when you hear, “I’m hungry!” from your child in the back seat. Get a dry erase white board and plan your meals out for the week. Incorporate the kids in the process. Taco night or breakfast for dinner can still be offered as a balanced meal. If headed to a party, plan to make a dish that you know has good nutritional value and that your family will eat at the party. I like to think as planning ahead as “mapping out your nutrition” for the day/week. Now, yes, this does take effort but so does getting dressed or maintaining hygiene. If you make it part of your routine, you won’t be bothered by the time it takes.

Keep your plate colorful! Try to eat from a variety of colors during your day. Each color represents different phytochemicals, antioxidants and nutrients for your body. They are all important. If you only eat one color all the time, you may be missing out on other vitamins and minerals important to your heart health, the skin or immune system. Be creative with your colors. Try new colors of foods. We have over 10,000 tastes buds and they change often and over time. Repetitive tasting of foods will help one acquire a taste. Don’t get frustrated but find different ways to incorporate a new food if your child/ren won’t accept it.

Pair protein with each meal and snack! Protein is the building blocks of our bodies. By pairing protein with a carbohydrate or fat, your digestion will be slowed and you will have less spikes in your blood sugar. Try the peanut butter with the apple or banana; add a cheese stick to your crackers; dip sliced peppers or carrots in your hummus or veggie dip; add avocado to your toast; try almonds with your dried fruit. You will have more lasting energy and feel stronger.

Choose fruit for dessert if looking for something sweet! This is a nice way to add more nutrients while feeling like you are fixing your craving for sweet. Yogurt and berries, banana bread, mango sorbet can be a lower calorie, higher protein, nutrient-enriched option.

I would like to end this blog with Role modeling good healthy behavior. Eat to live, not live to eat! As a heart mom, and a cardiac dietitian, I am endlessly reminded of how precious life is. Be kind to your heart and live as you want your children to live! Yeah, it sounds cheesy but it works. If they see you exercising routinely, packing your lunch for work, making meals as a family, downing a kale smoothie, or trying something new they will follow this learned behavior. Find balance again when you may have fallen off. Be mindful of your body and health and don’t waste time with weight loss pills or quick fixes. Use hard work, education and dedication to help you be successful in maintaining a healthy weight.

 

You can find more healthy nutrition information at various nutrition blogs. See nutrition blogs for all categories at: http://www.nutritionblognetwork.com/

 

Megan Horsley, heart mom, heart dietitian
Pediatric Dietitian @ Cincinnati Children’s Hospital Medical Center
Megan.horsley@cchmc.org

 

My Heart Hero: Maggie

 

 

 

 

Megan Horsley is a Clinical Pediatric Registered Dietitian at Cincinnati Children’s Hospital Medical Center. She currently practices in the Critical Cardiac Intensive Care Unit as well as outpatient cardiology areas. She is a Certified Nutrition Support Clinician in addition holds a Certification as a Specialist in Pediatric Nutrition. She received her undergraduate degree from the University of Cincinnati in 2006 and completed her dietetic internship with the University of Northern Colorado in 2007. She has been a lead dietitian for the Children’s Heart Institute and participates in many projects and community services such as, The National Pediatric Cardiology Quality Improvement Collaborative, family education day and heart camp to name a few. She recently joined the Cincinnati Children’s Heart Association Board in October of this year. She has ten years of professional practice in pediatric nutrition and thirteen years of personal experience as a heart mom herself. She plans on continuing to concentrate her efforts on improving the nutritional care, experience and outcomes for all children affected by heart disease.

 

 

 

 

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.

Arrhythmias – Tachycardia Explained (Part Two)

Last week we discussed the issues that can cause the heart to beat too slow. This week, we look at what happens when the heart beats too fast. Carol Raimondi, completes part two of her resource on arrhythmias, this time covering tachycardia.

 

 

Tachycardias

There are many types of tachycardias, but here we will focus on the most common tachycardias seen in congenital heart defects. When diagnosing these arrhythmias, the same tests as mentioned in part one are used to determine the arrhythmia. The only additional diagnostic test that is common with tachycardias, is an electrophysiology study (EP study). This test helps to confirm diagnosis and locate where an arrhythmia originates. It is done by a cardiologist who specializes in heart rhythm disorders in the EP lab. This is an invasive test where thin catheters are placed through the arm, leg and/or neck, then threaded through the blood vessels to the heart. The doctor can then use these to map the electrical conduction of the heart and reproduce arrhythmias in a controlled setting. This is very useful in planning for treatment.
Sinus Tachycardia
This refers to a heart rate that is more than 100 beats per minute.  Common reasons this occurs is due to a physiologic response to exercise, fever, dehydration,stress, pain, or stimulants, such as caffeine. When the factor that caused it is resolved, then generally, the heart rate returns to normal.
Atrial Fibrillation
A-Fib, as its often called, is the most common type of tachycardia. It occurs when, instead of the sinus node initiating the electrical conduction, there are many different impulses firing throughout the atrium. This results in a fast and very chaotic rhythm. Since it is so fast and irregular, the atria quiver or “fibrillate” and are unable to effectively squeeze the blood into the ventricles. A-Fib can come and go, or it can be continuous. Symptoms may include palpitations, lightheadedness, shortness of breath, fatigue or fainting, though some patients have no symptoms at all. The main concerns with atrial fibrillation is the increased risk of stroke and heart failure. As the atria are not emptying fully, blood can pool within the chamber and form blood clots.The clot can then travel to the brain and cause a stroke. Also, the irregularity of the rhythm makes the pumping action of the heart less efficient. If this continues for a long period of time, it can weaken the heart muscle, causing heart failure.
Atrial Flutter
Similar to A-Fib, atrial flutter occurs when the electrical conduction originates from an abnormal circuit in the atrium. With atrial flutter, there is still a very fast heart rate, but the rhythm is regular. It is not uncommon have atrial fibrillation in addition to atrial flutter. Like atrial fibrillation, the symptoms of atrial flutter can include palpitations, dizziness, fatigue, shortness of breath or fainting.
Supraventricular Tachycardia(SVT)
Supraventricular, or “above the ventricle”, tachycardia, is also referred to as atrial tachycardia, It occurs when there is an extra conduction pathway in the atria, usually present since birth, that creates a loop of overlapping signals. This arrhythmia is rarely life threatening. It is not uncommon for the atrial heart rate to get up to 300 beats per minute during an episode of SVT.  An episode may last for a few seconds up to a couple of hours. Symptoms of this include palpitations, feeling as though your heart is “racing”, lightheadedness, or shortness of breath. If the arrhythmia lasts for more then 20 minutes, it is recommended to go to the emergency room to receive medication to treat the irregular rhythm.
Ventricular Tachycardia
This refers to a very fast heart rate the comes from abnormal electrical signals in the ventricles, or lower chambers, of the heart. Since the heart rate is so fast, it does not allow adequate time for blood to fill into the ventricle, thus a much lower amount of blood is delivered to the body. These arrhythmias may last only a few seconds and not cause any issues. If it continues longer than that, it can be very serious and requires emergency treatment.  Symptoms are similar to the other tachycardias, but fainting can occur if it is sustained for more than several seconds.
Ventricular Fibrillation
This occurs when very fast, chaotic impulses in the ventricle cause it to quiver, or fibrillate. When this happens, blood can not  be pumped efficiently to the body. This is considered a life-threatening emergency if not treated within minutes and requires a defibrillator to “shock” the heart back into rhythm.

Treatments

Treatment of tachycardia can be divided into two separate categories, prevention of arrhythmias and treatment during an arrhythmia.
Prevention
Catheter Ablation- This is an invasive procedure that, like an EP study, involves insertion of small catheters through the arm, leg, and or neck, that are threaded through blood vessels into the heart. Once the abnormal circuit is found, the catheter uses either heat or extreme cold to damage the extra pathway, thus preventing it from allowing the arrhythmia to occur.
Medication
There is a class of medication know as anti-arrhythmics that doctors can prescribe to help prevent fast heart rates. These may be used in conjunction with other cardiac meds, such as beta- blockers or calcium channel blockers, to provide optimal coverage in keeping the heart rate and rhythm regular. Another class of medication that is used frequently for atrial fibrillation is anti-coagulants, or blood thinners. Warfarin, or Coumadin, is still the most commonly used type of blood thinner, but there are newer medicines that can be used as well. While blood thinners do not prevent atrial fibrillation, they help prevent blood clots from forming, thus reducing the risk of stroke associated with this arrhythmia.
Pacemaker
When a fast heart rhythm, such as A-Fib, is not successfully prevented by medicine or catheter ablation, a pacemaker can be used to help control the arrhythmia. As discussed in part one, a pacemaker will watch the heart for abnormal rhythms, and then initiate the correct conduction when needed.
Implanted Cardioverter Defibrillator(ICD)
Similar to a pacemaker, this small device is surgically implanted under the skin. It has leads that are threaded through a vein into the heart. The ICD then “watches” the heart, and, if a dangerous arrhythmia such as ventricular tachycardia is detected, it will deliver electrical shocks to the heart to restore a normal rhythm. The device is programmed with specific parameters so that the device does not shock inadvertently. It sends data wirelessly to the physician via an in home monitor, and also requires semi-annual visits to the pacemaker/ICD clinic for a full interrogation.
Surgery
Though rarely done for arrhythmia prevention alone, a surgical procedure can be done to block the abnormal pathways. Known commonly as a MAZE procedure, a number of small incisions are made in the heart tissue in a specific pattern. The scar tissue that forms from these incisions does not conduct electricity, so the abnormal pathway that was causing the arrhythmia is blocked. This procedure is usually done if the patient is having open heart surgery to treat another heart disorder.
Treatment During an Arrhythmia
Medication
There are a number of medications that can be administered intravenously to stop an arrhythmia while it is is happening. The type of medication will vary depending on the patient and the arrhythmia. There are also oral medications that can be taken at home to help control fast or irregular heart rhythms.
Vagal Manuevers
The vagus nerve is responsible for heart rate. There are certain maneuvers that affect this nerve, and can be used, with physicians instruction, to help lower a fast heart rate. Some of these include coughing, bearing down (as if having a bowel movement), and applying ice to the face and neck area.
Cardioversion/Defibrillation
Cardioversion can be done to help “reset” the conduction system of the heart. It may be performed as a scheduled procedure for someone who has had ongoing atrial fibrillation.This is done while the patient is sedated in a controlled setting with a lower amount of electricity. It also is used in emergency situations when ventricular tachycardia or ventricular fibrillation is present. This is done by placing paddles or patches on the chest. Then, a charged current is delivered that affects the electrical system of the heart and intends to restore a regular rhythm.
Carol Raimondi is an adult CHD patient and nurse, living with Congenitally Corrected Transposition of the Great Arteries.  She has had 4 open heart surgeries in her 40 years, as well as a pacemaker since the age of 6. After spending a large part of her childhood in and out of hospitals, she developed a passion for nursing. She went to school to become a cardiac nurse. Carol’s many hospital experiences helped her as a nurse to better understand what her patients were going through and  to care for them with that much more compassion and empathy.
Due to worsening medical issues, Carol had to give up the profession she loved. That did not stop her from being a patient advocate, however. She joined her local hospital’s’ Patient Family Advisory Council, which she now co-chairs, and shortly thereafter she joined Mended Little Hearts Chicago(MLHC) as an adult CHD liaison. She then expanded her work in the CHD community by starting an adult and teen CHD group within MLHC and became an  Ambassador for the Adult Congenital Heart Association. Currently she sits as the Pediatric Congenital Heart Association of IL(PCHA-IL)  President. Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.

The Biggest Gift

After  receiving a heart transplant, Megan Horton,  a Texas Children’s staffer shares how she celebrates the biggest gift she’s ever received . Happy Holidays, Everyone! 

 

 

Twelve years ago, a family lost their daughter. Twelve years ago, a 17-year-old lost her best friend. Twelve years ago, friends, family and loved ones had to say goodbye to a girl who passed away too soon.

Twelve years ago, I received the gift of life at Texas Children’s Hospital with a heart transplant. It’s always hard for me to celebrate my “heart birthday” each summer, when I know a family is grieving. The girl who donated her heart would have been 27 this year. I hope her family would find joy in all the things I’ve been able to accomplish by receiving the gift of their daughter’s heart.

In the past 12 years, I’ve accomplished so much. I graduated from high school and college, moved to a new city, landed my dream job, celebrated so many birthdays and anniversaries, and traveled to paradise.

I was only 14 years old when I received the greatest gift of my heart transplant, and while I’ve faced many challenges, I’ve always tried to have a positive outlook on life and remember that my life is a gift.

Each and every Christmas, no matter what presents are under the tree, my greatest gift is always the fact that I am there to celebrate with my family with a strong and joyful heart.

I’m very blessed that I received my transplant when I did. Every day, 22 people will pass away because they didn’t receive an organ in time. Please sign-up to be an organ donor and make your wishes known to your family. If you’d like to learn more about organ donation, please visit DonateLife.net.

 

 

Megan Horton is a heart recipient and the blog content manager for Texas Children’s Hospital.

Wellness – The Most Wonderful Time Of Year

The Holiday Season is meant to be filled with family and joy. It can also be a time of great stress, especially for families with chronically ill loved ones. In today’s post, Becky Hunt shares her experience with losing a child to CHD as well as managing her own illness, and explains how to de-stress from it all around the holidays.

 

 

 

Ah, December! It’s the most wonderful time of the year! Time for enjoying the festivities of the season! Exciting, right?! Well, for many of us, the next few weeks bring along added stress that can dampen our spirits and make the season a little less bright. Making travel plans, buying gifts, driving the kids to this party and that program, it’s non stop! Most “wonderful” time? Talk about most STRESSFUL time of the year!

 

Christmas was always my most favorite time of year! That was until my world came crashing down on me many times over.

My story starts with a little girl named Gracie. My baby girl. Gracie was born August 2nd, 2012 with Hypoplastic Left Heart Syndrome, or “half a heart”. She lit up my life for 82 days. The girl who changed MY heart inspired me to start a non-profit organization that creates dream cakes for kids with Congenital Heart Defects to brighten their lives. 5 years later that non-profit, Cakes From Grace, is thriving and growing and reaching more and more heart families by the day.

3 years after we lost Gracie I heard the 3 words that no one ever wants to hear, “YOU HAVE CANCER”.

Cancer.

Me? Haven’t I been through enough? Why me? Why now? I have CAKES to bake!

But the truth is, Cancer seemed to be nothing compared to losing your child or even seeing THEM suffer the way she did in the hospital for 82 days.

But I am here 2 years later, gone through several surgeries, 2 years of treatment and no Cancer in sight.

After Gracie passed away I dove right back into work. Started 5 different businesses (like one wasn’t enough). And just buried myself in it. At first work was my place to hide, to escape, it was a distraction, a place I could numb the feelings and avoid the hurt.

My obsession with work grew and soon it turned into an obsession with stress. I couldn’t escape. I felt like if I stopped then the world would crumble beneath me. Like I was letting people down. Constantly giving of myself, my services, my time, never saying no.

Christmas was always my most favorite time of the year. That was until we lost Gracie. I found myself angry that there wasn’t a spot at the table for her. No gifts under the tree for her. She wasn’t there to decorate the tree with me or sing our favorite Christmas songs I always sang to her.

The Holidays for me started to turn into a chore. The lists, the gifts I needed to find. My loved ones started to become a checklist. Ok, that person is done, 3 more to go, and 1 week to get it done before Christmas!

The endless amount of things on the Calendar. Christmas concerts, parties we were invited to, family get-togethers, gift shopping, UGH and the standing in lines! When am I gonna have the time to put up a Christmas tree?! 23 days of December just are NOT enough to fit it all in!

Everything constant, work, grief, the to-do lists all piling up!

 

Then how in the world DO you fit it all in? How in the world can you DE-stress?

 

1. Master The Art of Saying “No”

You don’t HAVE to attend every party you are invited to. Make a list of all the parties you and your kids were invited to, have them pick 1 or 2 of them to attend, not all of them.

2. Skip The Lines

You don’t have to go out and stand in those lines waiting to purchase the ONE thing you came here for! Shop online if that stresses you out! Put up your feet and cuddle up at home! Let the USPS guy bring it to you!

3.Take Time for You

Instead of giving your spouse a list of things you would like for Christmas, as a gift, ask him to take the kids out for a few hours while you read a book or watch a Christmas Movie and drink a glass of wine in a QUIET house. Ah, doesn’t THAT sound nice?!​​​​​​​​​​​​​​​​​​​

4. Write a priority list, NOT a to-do list!

Instead of freaking out over the things you need to get done, try to organize your list in order from what the top priority/needs to be done right NOW to what can wait for a bit.

5. Put the work DOWN

For some of us we can make our own hours, like myself. For others, you don’t have that luxury. But if you DO have the option, carve out at least 1 hour during your day to do something for you. Something that makes you happy. You’ll go back to work feeling refreshed.

6. Acknowledge Your Feelings

The holidays can bring up a whole bunch of emotions from sadness & loss to anger & frustration. It is OKAY. Just because it’s the ‘happiest time of the year’, does not exclude you from feeling those emotions. Forcing that “happy” on yourself can weigh you down even more.

​What I’ve learned is you can’t take care of your house, your kids, your to-dos if you don’t take care of YOU first.

Life is so darn short, kids grow fast and days grow faster.

I challenge you this season. Take more time for you and your loved ones. Maybe this is the year you start new traditions of making home made gifts and cookies and treats instead of spending the time to shop, spending that time away from laughter and joy. Or in my case, just BAKE cake!

Laugh more, live more this season. I DARE you!

 

 

Hi Friends! I’m Becky, Mama of the funnest (yes that’s a word in my world) 4 year old and the bravest Heart warrior who lives in Heaven.

I consider myself a lifestyle blogger with a focus on all the things I love and am most passionate about!

I’ve gone, done and experienced a lot in my adult life and I have a passion for sharing and serving. From losing my first daughter, Gracia, to a Congenital Heart Defect at just 82 days old, going through Cancer treatments and surgeries over the past 3 years to running 5 separate businesses as well as a non-profit organization just within the last 5 years.

And now closing a toxic chapter in my life and choosing to start over. Starting fresh and following my BIG SCARY dreams of becoming an author, writing a blog, being a life coach, videographer, continuing to grow my non-profit and putting myself out there in hope that I may inspire and help someone going through their own struggles, triumphs and hurts.

I’m a work-aholic and a stress-aholic on the recovery train to freedom! My mission is to be the best me I can be and to help other women find out what that means for them too.

Learn more about Becky:   https://www.beckyhunt.me/

 

 

 

 

Recap – Teen Topics

The 2017 Teen Topic Series posts are all here in one place. Take a look back on the important issues discussed!

 

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

PCHA began its Teen Topics Series with a post about employing medical IDs as a useful tool. American Medical I.D.s, introduces IDs 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 .

 

Going Off to College

Going off to college is a major milestone in a young adult’s life. For many, it is the first time living away from home, from their parents, and from everything familiar to them. A chronic illness can complicate the transition. In this week’s blog, Abby Hack shares what it was like for her to gain her independence while managing atrioventricular block.

 

Preparing Your Child for Independence

We heard from Abby Hack on heading off to college. Now, we will hear from her mom, Janice. Watching your child leave home for the first time can be worrisome, especially with cardiac issues to consider. Janice shares with us how she has helped prepare Abby to take greater ownership of her own care.

 

Q&A: Your Questions Answered

in September 2017, patients and families submitted the questions they most wanted answered. We caught up with members of PCHA’s Medical Advisory Board, at the Transparency Summit, to ask those questions. Check out the videos, featuring Dr. Marino, Dr. Madsen, Dr. Gurvitz, and Dr. Sood’s answers on teen and young adult topics.

 

The Top 10 Things to Remember

As the seasons change, new milestones come and go. These can be especially trying times 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.

 

Arrhythmias – Bradycardia Explained (Part One)

This week former Cardiac Nurse, Carol Raimondi, provides us with the first of a two-part resource on arrhythmia and the various diagnosis and treatment. Up this week: Bradycardia.

 

 

 

 

Congenital heart defects are frequently accompanied by issues with the electrical conduction of the heart. These issues can cause a slow heart rate( bradycardia), a fast heart rate (tachycardia), or an irregular heart rhythm, also referred to as an arrhythmia. There may be one of these conduction defects present, or several at the same time.This can be due to the structural defects that were present at birth, or related to scar tissue that develops with each surgical intervention.  Fortunately, there are options to treat these irregularities.
Here we will be discussing the most common types of issues related to the electrical system of the heart. In order to discuss these abnormalities, first you should understand how things are supposed to work.
In normal conduction of the heart, the impulse is initiated in a group of specialized cells, called the sinus or sinoatrial (SA) node. This is located in the right atrium, or upper chamber, of the heart. Once initiated, is causes the both the right and left atria to contract. The signal then continues to the Atria-Ventricular (AV) Node. This is found between the upper and lower chambers. The signal slows slightly through here, allowing the blood to empty from the atria and enter the ventricles, or lower chambers. From there, the signal continues down through the lower chambers via the left and right Bundle of His, causing the ventricles to contract. Each time this cycle occurs, it results in one complete heart beat. When working properly, it should repeat this cycle without interruption 60-100 times per minute.
Bradycardias
Sinus Bradycardia:
This describes a regular rhythm with a rate of less then 60 beats per minute. Sinus bradycardia is usually a benign finding. It is frequently seen in athletes or during sleep. There is generally no treatment for this unless the patient has symptoms, such as lightheadedness or fatigue. In such cases, further evaluation is done to determine an underlying cause, such as medication side effects or metabolic disorders.
First degree AV block:
This refers to a prolonged delay in conduction between the atria and ventricles. Generally, there are no symptoms associated with this, as the ventricle still does contract with every beat. No treatment is required for this type of heart block.
Second degree AV block:
Type 1- This is the less critical of the two types of second degree blocks and rarely requires treatment. In type 1, there is a progressive lengthening of the time it takes for the signal to travel from the sinus node to the AV node. With each contraction, it takes longer and longer until the ventricle “skips” a beat and resets the cycle.
Type 2-  In type 2 AV block, there is no specific pattern to when the signal is blocked from the atria to the ventricles. When this signal is blocked, the ventricles do not get the message to contract, and thus the blood is not pumped to the body. This often leads to third degree heart block. A pacemaker is implanted to treat type 2 AV block.
Third degree AV block:
Third degree, or complete heart block, refers to when the signal between the top and bottom chambers of the heart is absent. The ventricles use a “back up” electrical system, which produces a much slower heart rate then normal. The atria continue to contract as well, but there is complete dissociation between the top and bottom chamber, so the amount of blood being sent to the body is lessthen usual. Symptoms associated with complete heart block include lightheadedness and fainting. If left untreated, this block can cause death. This type of heart block  is critical and requires emergent treatment with a pacemaker. Often a temporary, external pacemaker is placed until the patient receives the permanent pacemaker.
Bundle Branch Blocks (BBB):
The Bundle branches are the fibers that carry the electrical signal from the AV node down through each ventricle. They are described as either the right or left bundle branch. When there is an interruption in this pathway, it is referred to as a bundle branch block(BBB). Generally, bundle branch blocks themselves do not cause any symptoms or require treatment. Further cardiac assessment should be done, however, to determine if there is an underlying cardiac condition. Right BBB is often seen in Congenital Heart Defects, especially in atrial or ventricular septal defects. Left BBB can frequently be seen in patients with coronary heart disease, or with weakening of the heart muscle.
Diagnosis
The cardiac conduction irregularities listed above can be diagnosed in several ways. The most common is by performing a 12 lead electrocardiogram (ECG) This is a non-invasive test where patches, connected to leads, are placed on the skin. The technician ensures that the patient lays still for 15-30 seconds while a reading of the electrical signals through the heart is done. A printout of these readings can immeadiately show the heart rate, rhythm, and any damage to the muscle of the heart.
A holter monitor, similar to an ECG, involves applying electrodes to the skin in specific locations. Generally, there are 5 leads or less. These leads are connected to a small device that has recording capabilities. The patient can wear this device for 24-48 hours, depending on the physicians preference.  The device continuously records during the time that it is worn. Once returned, the ECG recordings are downloaded to a computer for a physician to review. The advantage to this test is that  with a prolonged recording period, there may be abnormalities detected that an ECG, which gives a “snapshot” can not detect.
An event monitor is similar to a holter monitor, in that it it is a small portable device that allows for prolonged recording of heart rate and rhythm. This device is usually worn for up to 30 days, and usually the patient can push a button on the device when he/she is experiencing any symptoms. Then they can call in to the device monitoring company and transmit the reading, which is reviewed and forwarded to the patients physician.
Treatment for Bradycardia and Heart Block
Of the above conduction issues, treatment is generally only required for second degree type 2 and third degree heart block. A small, electronic  device, known as a pacemaker, is used to restore normal conduction. This device is surgically implanted in the upper chest or abdomen, just under the skin, in a “pocket” the physician creates. Leads connected to the pacemaker are then threaded through a vein into the heart, where it is attached. The pacemaker “watches” the heart rhythm, and when it detects abnormal conduction, it sends an electrical signal to the heart. The pacemaker is programmed to not let the heart drop beneath a certain rate. Newer pacemakers transmit data wirelessly to their doctor or pacemaker clinic via a small device that can be kept near the patients bedside at home, This allows the physician office to monitor the functioning of the device without requiring the patient to call in, as was done in the past . Usually, every 6-12 months, an in-office pacemaker check is required to do full testing on the device, but this is quick and non-invasive. Pacemakers can last 7-10 years on average, depending on what percentage of time the pacemaker is in use.
Please join us next week for Part Two – Tachycardia.

Carol Raimondi is an adult CHD patient and nurse, living with Congenitally Corrected Transposition of the Great Arteries.  She has had 4 open heart surgeries in her 40 years, as well as a pacemaker since the age of 6. After spending a large part of her childhood in and out of hospitals, she developed a passion for nursing. She went to school to become a cardiac nurse. Carol’s many hospital experiences helped her as a nurse to better understand what her patients were going through and  to care for them with that much more compassion and empathy.

Due to worsening medical issues, Carol had to give up the profession she loved. That did not stop her from being a patient advocate, however. She joined her local hospital’s’ Patient Family Advisory Council, which she now co-chairs, and shortly thereafter she joined Mended Little Hearts Chicago(MLHC) as an adult CHD liaison. She then expanded her work in the CHD community by starting an adult and teen CHD group within MLHC and became an  Ambassador for the Adult Congenital Heart Association. Currently she sits as the Pediatric Congenital Heart Association of IL(PCHA-IL)  President. Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.

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

Cardiac Devices – The Elephant in the Room

With each CHD, there is no certain path, no one course looks like the next, and complications vary widely. Though a patient may have a specific structural diagnosis, different arrhythmias may develop over time, however patients and families are not always made aware of this possibility immediately. That’s why the diagnosis of an arrhythmia may surprise parents and send them for a loop, just when they think they’ve seen it all.  This also makes it difficult for parents to know just how much to share with teacher and other adults in their children’s lives, just as Alison Connors shares with us this week.

I’m often wondering what to tell people when they ask me about our children. It’s something most parents think about I’m sure. What details will help this teacher, this coach, this babysitter take care of my child? What can I share with them that will give them a view of who they are while they are in their care? For me there is always this looming question of what to say when discussing my children. On one hand I want them to treat my children as the unique individuals they are, discover new things about them, but on the other hand we do have this elephant in the room which is CHD.

I am a mother of three with two children who have faced Congenital Heart Defects. Like most Heart Parents it’s not something you plan, but it’s our life and we do a pretty good job at navigating C.H.D. It is always on my mind what and how much to share especially since two of my children have irregularities in their heart rhythms or arrhythmia.

Arrhythmia isn’t something I thought about when my children had their open heart surgeries. Actually, it was never mentioned when they told me about their hearts and never mentioned until few years ago. I think in the medical profession they are more of the approach of “we will get to that hurdle when and if we get to it.” Even the vague definition for Congenital Heart Defects is ‘problems with the heart’s structure present at birth’ that doesn’t really lead you to believe you may also have “electrical” issues as well or it didn’t in my non-doctor mind. CHD has so many forms and complexities that there isn’t a one size fits all explanation or treatment, so I see their hesitation to lay it all out there. Unfortunately that makes CHD affecting your family a situation of having to roll with the punches of what is going to happen, or at least that is how I have felt.

About two years ago, we were told our daughter had 1st degree heart block. After 4 years of seemingly good appointments, it flung me back into that intense worrying state of mind that we were in for her first year of her life.1st degree heart block, once again something was affecting my child that I had never even heard of before. I remember thinking, “ok, block doesn’t sound good, especially when describing my daughter’s unique heart.” “Why wasn’t this mentioned as a possibility? Or was it, is that the same thing as a murmur? Maybe they mentioned it? No, I would have remembered that.” We were told not to worry, but of course one of my favorite quotes is ‘telling a mother not to worry is like telling water not to get wet.’ I remember crying in the bathroom after we got home from the appointment. Although I knew CHD was lifelong I felt like we were ahead of it or at least had it under control. Arrhythmia seemed like the scariest effect of her surgery. I may or may not have googled how much an AED costs.

With this new information we did what we could and I quickly learned that we did not in fact need our own AED. We did our research and we asked questions. It turns out that arrhythmia is pretty common among some patients who are affected by CHD. That was reassuring for some reason, at least she wasn’t the only one and her pediatric cardiologist was very familiar with this. We followed up about Holter monitor results and asked what to symptoms to look for in the future. We were told that pacemakers would most likely be in her future, but time would tell on when. We were met with some ifs and buts since, unfortunately, our cardiologist is not a fortune teller. Wouldn’t that be nice though? Note to self: google physic pediatric cardiologist. Just kidding. Fast forward just 6 months later and our youngest and second heart warrior was too experiencing irregular heart rhythms. This time, I was more prepared and less shocked. Of course his arrhythmia is not the same as our daughters, but arrhythmia was now on our radar so to speak. Isn’t it weird how things like this become your new normal? Now we had a new discussion point when it came to our kids and how to approach this new element of their health concerns added a new layer to who our kids are.

 

Thinking about my children at school and how to explain CHD and arrhythmia to their teachers worried us. I would go back and forth on how much to disclose at their schools. I wanted to keep them safe of course, but I didn’t want them to be known for just one thing, that being just their special hearts. We decided to air on the side of caution and give specific details about our children’s hearts to their teachers and school nurse. I am so glad we did because our daughter’s school nurse kept referring to it as congestive heart failure. Yikes, right? While we were worried what to share, our kids were busy telling everyone about their hearts and showing off their Holter monitors. They decided to take the lead and give full disclosure to anyone they met. We were surprised, proud and kind of felt silly. We worried what to say about the “elephant in the room” and how to say it, but when it came down to it, it didn’t matter. To their teachers, they were still just two happy kids in their school and their friends think it’s cool they had heart surgery. At this moment, we have things figured out, but of course life has a way of happening while we’re busy pretending we know what we’re doing and planning.

 

Two of our children are affected by CHD and have irregular heart rhythms. So where does this lead us? Like most Heart Parents we just don’t know what our children will experience next. This CHD journey isn’t written in stone and we will always have looming questions on what will happen and how to handle social situations well into adulthood. Will I one day have a heart warrior grandchild? Whoa, ok, slow down, but it’s already on my radar. We just have to stay tuned because with CHD we just don’t know exactly what path we will take. At least we no longer see CHD as an elephant in the room.

 

 

 

 

Alison Connors is a mother of three children: McKenzie, Jackson and Archer. Her oldest McKenzie and youngest Archer both had open heart surgery for congenital heart defects. McKenzie and Archer have been in the care of the PSHU team at Advocate Children’s Hospital in Oak Lawn, Illinois since birth. Alison has been married since 2009 to her best friend Christopher, and she recently went back to work as a 1:1 teacher’s aide for children with special needs. She and her family have a busy life, but she has a passion for volunteering and believes that there is healing power in taking part in something that is bigger than yourself. Having two children with CHD threw Alison onto a path she never expected to be on, but a path her family is very grateful to be on. It’s an honor for Alison and her family to share resources, give hope, and support to others who face the same situations that they have.