We are #CHDAware – Heart Month 2019

Heart Month has arrived! Here are a few key ways to help us raise awareness throughout heart month and all year long!

Participate in our Social Media campaign! 

Use your social media talents to shine and join the #CHDAware social media storm

February 7-14, the entire community comes together to help others understand how common congenital heart defects are, the need for research, and access to quality care. At PCHA, our programs serve to educate patients, parents, physicians, and lawmakers spreading awareness all year long, but we love to join in the February Fun! During CHD Awareness Week, we strive to inform those who may not be as familiar with CHD and our organization.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by liking and sharing our statistic infographics. We have a lot to share this year, so look out for these graphics all month long!

Make it personal – Using the hashtag #CHDAware, add details about your story, your experience, and be sure to Include a message about an aspect of CHD that matters to you. Examples: the need for research funding, advocacy or support for fellow families. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can turn awareness into action. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Facebook frame – As patients, parents, bereaved families, and providers we are all #CHDAware. Show your support for PCHA and spread CHD Awareness by adding this effect to your Facebook profile picture!

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

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Month-long #CHDAware Challenge 

Join the fun: become a fundraiser and earn great prizes!

Help us raise awareness and support patients and families, all while earning awesome PCHA swag!!

Our Goal: We surpassed our initial goal $25,000 in the first 10 days of the month so we DOUBLED IT! With just a couple days left of Heart Month we are 90% of the way to raising $50,000 to support our essential programs: offering care packages, hospital training’s, patient and family resources, and so much more.

CHECK HERE FOR UPDATES: Learn about the contest, check deadlines, view prizes and updates on winners for each challenge.


Great Shirt, Great Cause!

Our newly updated heart infographic campaign has ended but because of your amazing support we were able to sell 159 shirts to raise $1400 to directly impact the lives of CHD patients and families through our programs like public reporting, the guided questions tool, care packages, and the legislative conference.

Shirts will be delivered 2-3 weeks AFTER the campaign closes (Feb.14th).

Check out the great selection of styles and colors!


Gear Up to support heart families!

Check out our online store for #ConqueringCHD apparel, bags, buttons, and morel!

Don’t forget to pick up your very own Echo the Owl! The heart on Echo’s chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

Order your very own Echo the Owl today, and we will also add one to a care package to be given to someone hospitalized due to CHD. Echo can be Purchased in our online store HERE!


At the Heart with PCHA

PCHA was founded by everyday people, joining forces for change. Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special.

So far, we’ve heard from Amy, David, and Jess. Find their blogs below.

Amy, Director of Programs
David, Executive Director
Jess, Marketing Coordinator
Melanie Toth, State Chapter Coordinator


Lace up your shoes & put some heart in your step!

Registration is now open to participate in the 2019 Heart and Sole 5K Run/Walk to be held at Miller Park, the home of the Milwaukee Brewers, on June 22. Hosted by local families, all proceeds will benefit PCHA. Together, we are #conqueringCHD! Check out the Heart and Sole 5k Run/Walk facebook page to stay updated! Register today at: www.mkeheartrun.com

 



Let your artistic skills shine

Break out the crayons, markers, colored pencils, or paint! Add color to the page, and bring Echo to life with our printable coloring page that the whole family can color as they wish. Or bring Echo to school to color with friends, and teach them about CHD with our new Echo fact coloring page!

Want your finished masterpieces to be featured on our Instagram? Great! Just upload a picture of your finished coloring page and submit it to Echo at Echo@conqueringchd.org

School Intervention Series: Making A Difference

In the last week in our series on how CHD affects us at school and work, we hear from Kyle Herma, a School Intervention Specialist at Children’s Hospital of Wisconsin. Although this blog was originally posted in the summer of 2017, these tips, tricks, and recommendations for navigating a school’s system as a person who is affected by CHD, is still applicable today. 

 

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

 

Herma Heart Center

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

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

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

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

 

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

 

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

Back to School Q&A Panel

This week, we are continuing to learn about how CHD affects people in their work, or at school. This is an interview that was conducted back in August 2017, but is still relevant to our topic today. 

 

Congratulations on the start of a new school year! Please introduce yourself. What grade will you or your child be entering?

Frances: My name is Frances and I volunteer as the blog coordinator for PCHA. My husband and I live in California and have a confidant and outgoing 3-year old daughter who was born with severe mitral valve prolapse and a VSD. She had a very successful open heart surgery at 8 months old. She’ll be starting a couple mornings of preschool this year.

Margaret: Hi! My name is Margaret and I’m a heart mom to an awesome 8-year old heart hero named Kieran who will be starting 2nd grade. We’ve been through Birth to 3, as well as the IEP and 504 Plan process. I am also a parent adviser to our local hospital’s School Intervention Program.

Jack: Hello, my name is Jack Radandt and I was born April 15th, 2001, with Hypoplastic Left Heart Syndrome (HLHS). I had three open heart surgeries by the age of three, Norwood, Glenn, and Fontan. I lived a pretty normal life after my Fontan surgery. I was able to attend school, and even keep up with the other kids my age. At age eleven I experienced heart failure. I went to Children’s Hospital of Wisconsin in Milwaukee and was placed on the transplant list in October of 2012. I then needed to be on a device to bridge me to transplant. In December of 2012, I had surgery for a device called Heartware Ventricular Assist Device or (HVAD). I was the first single ventricle child in the United States to have the device and second in the world. I was also the first single ventricle child in the world to go home on this device. I had the HVAD for five months, until I received a heart transplant on May 20th, 2013.

What are you or is your child looking forward to most this school year?

Jack: I am looking forward to all the speaking events that I was able to get this school year.

Margaret: Kieran says, “gym!”

Frances: Making new friends. She has the ability to make a friend wherever we go, even when we run errands!

Do you notify your or your child’s school or teacher about your or your child’s heart condition? If so, how do you go about doing so?

Margaret: We definitely do. I’ve learned that teachers and school staff really appreciate being informed. Not every CHD student will need an IEP or a 504 plan, but we have both. Each teacher gets documentation about his HLHS, health, and classroom needs. Each year, I’ve met with school staff before school starts to make sure we’re all on the same page and to answer any questions. He has an excellent team at school that is communicative and proactive. We don’t just think about the regular classroom teacher — it is important to have a plan in place so that the school nurse, office staff, lunch and recess supervisors, gym teacher, substitute teachers, and any other school professional who might work with Kieran be informed of his health plan.

Jack: I do notify my school’s faculty, staff, and students of my condition, and I am very open about my scar and surgeries.

Frances: When filling out her general medical information for the preschool, we noted her cardiologist in addition to her pediatrician. She also has a medical device identification card for her annuloplasty ring in case any emergency arises affecting her heart. While our daughter has zero restrictions and no known issues otherwise, we included a copy of this card for the preschool and let the director know about it as a precaution.

Do you or your child have any limitations or require medication during school? If so, how do you handle this?

Margaret: Kieran has HLHS, and his cardiologist has requested that he stay indoors when it is below freezing. On these days, he gets to pick a classmate to stay inside and play board games with. He also has an adaptive PhyEd teacher working with him in gym class. He has a water bottle with him all day to prevent dehydration. For fire drills, he has instructions in his health plan to be allowed to wear a coat outside if it’s cold out. There are certain things we take on a case-by-case basis, such as field trips and walking trips.

Frances: Our daughter doesn’t have any limitations or medications, though the future is uncertain. Her heart will need to be monitored more closely during puberty as her device may be affected during this exponential growth period.

Jack: I don’t have to deal with this because I take my medication right before I go to school and right before I go to bed.

What reaction do you get from the staff if you notify them? Do you feel this affects how the teacher and/or staff interacts with you or your child?

Frances: They thanked me for sharing the information. They haven’t mentioned it otherwise, and from what I’ve seen do not give her any special treatment.

Margaret: We’re fortunate to have a neighborhood school that fosters a very positive learning environment for everyone, and is innovative about classroom adaptations. When we’ve notified them, they’ve responded very positively with a can-do attitude. Last year at our back-to-school meeting, not only did Kieran’s new teacher attended, but the office staff, principal, school nurse, and almost everyone involved with his IEP. Shedding light on the HLHS and the secondary challenges we’ve faced helps them understand how to meet Kieran’s needs better, as well as helps them understand why he (and we as parents) sometimes act the way we do.

Jack: Some of the faculty and staff that find out about my condition feel very uncomfortable about the whole situation.

How open are you or is your child about CHD with peers at school? How does this affect your or your child’s relationships?

Jack: I am very open about my condition. This is my life and I’m not ashamed of it at all.

Frances: Since she’s still very young, our daughter doesn’t make a point to either hide or reveal it. While I want her to be proud of her scar, I also want to allow her to talk about CHD on her own terms whether that’s mentioning it to close friends or being a vocal advocate. She is a naturally confidant and extroverted individual, so it doesn’t seem to bother her when someone points it out or asks. For now we focus on making sure she knows her scar is something good and how to respond in situations. I don’t make any consideration with clothing when it comes to her scar, choosing her outfits based on the weather and her own personal preferences.

Margaret: Kieran is very sensitive about his heart condition. We don’t actively keep it a secret, but we don’t actively volunteer information about it to his peers, either. He feels very strongly that he is a “normal” child and wants to be seen that way. Everyone is different, and I know many heart parents who believe it’s important for their child to be CHD advocates, but I feel it’s important for now for him to feel comfortable at school and have it be a “safe space” for him to feel normal. He sometimes does participate in CHD activities with me outside of school, but he doesn’t understand why they’re important. He sees his “heart friends” as regular friends. Many heart kids don’t truly know the gravity of some of their heart defects until they are much older. A cause that affects him much more, and has for years, is hunger and his desire to see everyone in the world have enough food to eat. I think that’s wonderful. We should all be able to focus on areas of need that spark our sense of fairness.

What is your or your child’s favorite subject or activity?

Frances: She loves the arts – dancing, painting and music.

Jack: My favorite subject in school is biology.

Margaret: Definitely gym. He also likes math and music.

What, if any, concerns do you or your child have in regards to CHD for the school year?

Margaret: My biggest concern is that somewhere, at some point, there might be a breakdown in coordination at school. I worry most when there is a substitute teacher in the classroom, because I’m not informed of it, and I have no idea if they’ve read his 504 plan and understand it. Luckily, he comes into contact with many staff throughout the school day, and I think they all do a good job keeping an eye on him and all the students. Sometimes, because he wants to be seen as “normal” in front of his peers, he’s not as assertive as he should be. I also worry about rough play during recess. This has been a problem at times throughout the past school years, where he will be tackled or otherwise roughed up during normal play, which has resulted in some bruising because he is on blood thinners.

Frances: You would have no idea our daughter has CHD besides her scar, so my only concern is her peers setting her apart in a negative way because of it. Her preschool focuses very much on emotional competence and socialization in a play based setting, and what we liked most about it when touring was how respectful every child was to each other regardless of their differences.

Jack: I am in a very small school so I really have no concerns besides being ill.

If you or your child has a high sensitivity to illness due to CHD, how do you or your child combat this at school?

Frances: While she doesn’t have a high sensitivity, her pediatrician still errs on the side of caution by making sure she gets the first flu vaccination that comes in for the season which we are thankful for. We also chose a preschool with a smaller class size and a strong emphasis on cleanliness.

Jack: I am sick a lot so missing school is always a big concern.

Margaret: The school nurse, or sometimes the classroom teacher, is really great about informing us about illness at school. They will email us personally if a lot of kids are out sick, or with certain communicable illnesses requiring all parents at school to be notified, the school nurse sends home flyers. We are most concerned about things like strep and seasonal flu. If it’s an outbreak the classroom, we would most likely keep him home until it had passed. We use hand sanitizer, get a flu shot, and try to get enough sleep and eat healthy. We emphasize to Kieran the importance of good hygiene. His school has a great custodian and they are good about keeping the classroom and school wiped down.

What is your biggest hope for yourself or your child this school year?

Jack: To remain on honor role and avoid illnesses.

Margaret: That he will make more friends and feel more included socially. Not only is he an only child, but like many CHD kids, especially those with critical heart defects, he is a bit behind for his age socially. Add to that the fact that he easily tires during playground games and has to take breaks during physical activities, he sometimes feels frustrated that he can’t keep up with other kids, especially most of the boys. Of course, I also hope he has a great learning experience this year and finds areas of learning he really loves.

Frances: I hope she will be able to make new friendships and start a solid foundation of a love for learning!

What area(s) is your child most successful at school?

Frances: Since day one, my husband and I have never experienced separation issues with her. She’s very adaptable, confidant and according to her preschool teacher, not at all afraid to ask questions.

Margaret: He a wonderful singer, and is also very creative when it comes to visual art. Last year, he did after school Spanish and book club, which was good for him. He is successful at reading, although he pretends to think it’s “boring.”

Jack: Science class over any other classes.

Thank you all for joining us this past month thoughout the Back to School Series, and best wishes for the new school year! 

Your Health vs. Your Career

This week we hear from Samantha Michaud, a CHD warrior, who speaks about how CHD has affected her career opportunities in life. And how your health ultimately has to come before your career. 

I was born a healthy (or so they thought) baby. I spent the first 2 months of my life slowly dying and no one knew what was wrong. It wasn’t until my 2 month check up that my family doctor heard something wrong with my heart. I was immediately sent to the hospital where they did an echocardiogram on my heart & saw something wasn’t right. I was then sent to Toronto Sick Kids via air ambulance. More tests were run. After a few days they decided to do a heart catheterization to confirm their suspicion. I was born with a congenital heart defect called Tetralogy Of Fallot. A few days after that I had full blown open heart surgery.

Overall, I had a rather normal childhood I was able to play hockey, volleyball and even flag football. I didn’t start having issues again until I was an adult. Later on in my adult years I kept complaining of fluttering in my chest. It was shoved off as anxiety. Then I got pregnant at 20 years old. My previous years tests results showed I was able to carry a pregnancy. Yay! When I was 24 weeks pregnant I had a halter monitor done due to the fact I blacked out one day at work and had to leave. It turns out that my blacking out episode was an episode of an arrhythmia called Ventricular Tachycardia. I was happy I finally had answers as to why I didn’t feel well sometimes and why I felt fluttering in my chest. But after one episode where I nearly fainted giving someone a shower, I knew my time had come. I knew I had to leave my job behind. You see, as someone with CHD being around heat makes me feel unwell. But having Ventricular Tachycardia secondary to my Tetralogy of Fallot just made that day all the more worse. My heart rate began to speed up, my heart began beating funny and I started to feel weak and faint. I got out of my clients house for fresh air, and called the office to go home. A week later I quit my job due to my health reasons.    

 

I was devastated that the stress from my job could cause so many issues that I would have to quit. My job requires me to deal with stress. Taking care of the sick, disabled & elderly was my calling in life, but due to the stress it caused me to deal with on the daily, I left my job. It was really hard to deal with as I loved my job and I loved what I did. But for my health I had too.

Leaving my job as a personal support worker has left me feeling helpless. It was a job I thoroughly enjoyed. I felt like I was giving back to healthcare, for what they have done for me. I helped people of all ages and created great therapeutic relationships with everyone I saw & their families. Leaving a job I really enjoyed was not the easiest decision to make. But I do see a bright future ahead of me. I have a beautiful, heart healthy, baby girl, and the opportunities are endless for the both of us.

Hello, my name is Samantha Michaud. I am 22 years old and have a 10 month old daughter. I am a personal support worker. I see a cardiologist once a year for my Tetralogy Of Fallot. I see an electrophysiologist every 3-4 months for my Ventricular Tachycardia.

Hidden Scars

At the start of the new year we often reflect on the year that has just passed, and for most of us, work and/or school is a large part of that reflection. We are kicking off the year with a series on how CHD affects patients, and families at school and work.  This post is written by an individual who wishes to remain anonymous, as they reflect back on their career and the role that CHD has played in their work. 

 

I remind myself that this time I will handle things differently.  I remind my myself that I am a grown 51 year old woman that has raised 2 kids and managed to maintain a marriage for 25 years.  This time, with this job, I will not just walk away when I can’t handle the outside stress in my life usually, brought on from my health.  This time I will communicate with my supervisor and explain to he or she what is going on in my life and have them help me find a solution, after all that is what a grown up does.

 

Call me lucky, but four fulfilling careers later, I am still working a great job that holds my interest, and I am surrounded by wonderful co-workers.  I know that there will be another health emergency in the future, that is just the way life is for a person with CHD.  I tell myself, when the next health incident happens, I will not give 5 days notice to an employer, like I did with the last job.  I will not just close down the doors on a business I worked so hard to build, like I did two careers ago. And I definitely will not walk away from an amazing career as an FBI analyst (a dream I had since I was young) like I did after I landed my first job out of college.

 

My parents taught me from a young age to find a job with health benefits.  They thought I should be a teacher, after all, as a teacher you will have summers off and “the rest during the summer will be good for you.” I understood the message, they really meant “be good for your heart.” Maybe that is why I leaned towards a job with government, the need for health benefits has been ingrained since I was young.

 

When I was growing up the environment was different, you hid your scars, you hid your health issues.  I remember applying for my first job it was with the FBI.  I filled out the 30 page background check form and stopped when I got to the medical section.  How do I spin this?  Do I put down congenital heart disease?  Do I write down Tetralogy of Fallot?  What if I write, “Hole in the heart – corrected 1972.”  That is not a lie I thought to myself, so I went with that explanation, they could ask for more information if they needed it.  Of course my education helped me land that first job, but I am still convinced that things would be different if I had fully disclosed my medical history.

 

No one ever taught me how to communicate my health issues with my employer.  I have been taught how to write a resume and how to interview. I have an excellent work ethic.  However, I am 51 and still don’t know how, or when, to talk to an employer about my health.  I know my future holds a pacemaker battery replacements, pulmonary valve replacements, and much time in the cath lab.  When should you discuss your health with your employer? Should you be upfront from the beginning or should you wait until an emergency and try to explain why you won’t be in for a week or two?  I know the best option lies in the middle.  However, I am at a loss as to where that balance is.  I guess you need to factor in the employer, job, personalities, and work environment.  I wish there was some magical formula one could use to decide at what point disclosure is best.

 

I look back with my career history with regret on how I choose not to be upfront regarding my health history.  I tell myself, this time I will handle things differently, but I know I will probably continue on my current path of non-disclosure.

The Gifts that Life Brings

Hello PCHA! I hope everyone is enjoying the holiday season. In the spirit of giving, here are a few short anecdotes on the most memorable gifts that life has brought us. Happy Holidays!!! 

The best Christmas present I received in recent years was family abandoning our usual Christmas traditions and coming to visit me after I was re-admitted to the hospital. My Mom having brought Christmas dinner to the hospital, gifts from my family, neurosurgeon and nurses alike and still being able to watch Christmas Eve service on TV. I was just grateful to have family and a good medical team.

– Erica Thiel; MPS I Hurler Scheie Syndrome w/aortic valve stenosis and insufficiency and Mitral valve stenosis and insufficiency, 35 years old.

One of the best gifts I have ever received came in a small blue paper bag with handles.  The contents escape me, except for the full bag of chocolate candies. What this gift represented was a reminder that I was not alone. That in one of the most challenging series of events in my entire life – placing my newborn baby first into a helicopter, then into the hands of doctor to perform life saving heart surgery – when all of my being was being poured into my baby, someone was thinking of me.  That is a gift I pay forward every single moment that I can.

– Amy Basken; mom to Nicholas, almost 14 years old, now.

The best Christmas gift my husband and I ever received was our baby twins coming home from the hospital. One has a CHD and the other is heart healthy but because of both the CHD and other complications, odds weren’t great for survival. They were born in mid October. One came home in late November and the other came home a couple of weeks before Christmas and we were finally all home together. The road ahead was/is still long, but it was magical.

– Meredith Rasmussen Atkinson; mom to Mirabel and Sofia Atkinson, 14 years old, now.

The best gift I have ever received was a Newfoundland puppy. I was in the hospital after my fourth open heart surgery, and my parent’s friends, who were breeding Newfoundlands, just had a litter of puppies. They told me that I would get to bring home a puppy when I got out of the hospital. Just knowing that when I got home I would have a brand new puppy, kept my spirits high, and provided a huge distraction from my current situation. I am forever grateful to that family for gifting me such a beautiful dog, and ultimately, a great friend. 

– Lauren Wells; Ebstein’s Anomaly, 24 years old.

 

 

 

November Recap – Grateful Hearts

Throughout the month of November, we took a look at everything we have to be grateful for, through the hard times and the good. And we discovered that we have so much to be grateful for in this crazy thing called life! 

I just want to make a quick note to the PCHA community, next week you won’t find our usual PCHA blog. Keep an eye out for something special this December and be sure to check back. In the mean time, we are posting tons of great material, so be sure to stay up to date! 

 

A Journey Shared – Joseph Burns

The Gift of Life – Sara Engstrom

Angels in Scrubs

Always Enough – Rebeka Acosta

Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

My Cause My Cleats 2018

 

 

NFL / #MyCauseMyCleats

Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

Jacksonville Jaguars Kicker and Pro Bowl contender, Josh Lambo, brings much needed attention to congenital heart disease with his My Cause My Cleats charity selection for 2018. This NFL tradition will place CHD in the national spotlight, this football season. Josh will wear his cleats, recognizing PCHA during games 13,14, and 15! By highlighting CHD, Josh and the Jaguars pay tribute to patients and families affected by the most common birth defect. 

My niece was born with a hole in her heart and is regularly challenged by her condition. The Pediatric Congenital Heart Association’s goal is to conquer heart disease and I strive to bring awareness to their mission in hopes that they can help my family and others overcome hardships in their health.

Click on the Instagram post below to see Josh’s video announcement where he shares about his niece Leah, who was born with a hole in her heart. “She had to have open heart surgery when she was three months old.”  He notes that it was a difficult time for his family, “it’s a stressful time in any one’s life.”   Josh shows his incredible compassion and his reason for supporting PCHA: “For any other families that have to go through that, I want to make sure that they are well taken care of.”  We are thrilled to hear that Leah is doing well now, loving life and doing great!!!

We thank the NFL, The Jacksonville Jaguars, and, especially, Josh Lambo for bringing awareness to congenital heart disease through their support of the Pediatric Congenital Heart Association. 

More coverage:
Jacksonville Jaguar News Release 
Bleacher Report Coverage

About Congenital Heart Disease (CHD) – CHD consists of problems with the heart’s structure or the way it works that are present at birth, including related lifelong consequences. CHD is the most common birth defect, affecting 1 in 100 babies born each year.  CHD is a lifelong disease requiring ongoing specialized care, there is no cure. There is an estimated 2.4 million people living with CHD. Twenty five percent of children born with CHD need heart surgery or other interventions to survive, yet as patients grow up, fewer than 10% of adults are receiving recommended care. Congenital Heart Disease is the #1 cause of birth defect related deaths,

About the Pediatric Congenital Heart Association –  The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness. Visit our website at www.conqueringchd.org

For additional information, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

Find us on social media:

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#GivingTuesday: Give Knowledge. Give a Voice. Give Hope.


Here are a few key ways to make an impact on #GivingTuesday:

 

Donate or Create a #GIVINGTUESDAY Facebook Fundraiser

Make every dollar matter when you give to PCHA by helping us put essential resources into the hands of hospitalized patients and families. Whether two days old, or twenty years young, having knowledge, a voice and hope is essential, particularly when in the hospital. Every dollar donated on today supports our care bags containing nationally respected educational resources and soul soothing comfort items.

Donate to our Giving Tuesday Facebook campaign HERE

Stretch your dollar – Create your own Giving Tuesday Campaign for PCHA on Facebook and challenge your friends and family to give, too!!

Not on Facebook? No worries, you can still donate through our website.



Echo the Owl Holiday Sale!

Due to popular demand we are extending our Black Friday Echo sale! Purchase by December 10th to receive your Echo in time for a holiday gift, and help us Conquer CHD! Get 25% off your purchase of Echo the Owl and we’ll also give one to a patient hospitalized due to Congenital Heart Disease.

Use promo code: ECHO25

when you head to our online store.

This adorable plush owl stands 8 inches tall. His fur is soft enough to melt anyone’s heart. The heart on his chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

 

 


Join PCHA in Washington D.C.!

Registration is open for the 2019 Legislative Conference in Washington D.C.! Join us as we unite our voices with The Children’s Heart Foundation and Adult Congenital Heart Association to educate our members of Congress about Congenital Heart Disease!

When you attend this conference you will:
– Learn about current CHD activities in Washington D.C.
– Learn how to effectively tell your story.
– Connect with other CHD patients and professionals.
– Share your story with your members of Congress.
– Inform your legislators about the need for research and data collection.
– Make a difference on behalf of those living with CHD!

Your voice matters and together, we are #ConqueringCHD  

REGISTER HERE


 

Connect with your Local State Chapter

Help improve the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.  Through local activities like peer-to-peer support, care package distribution and educational materials, we are working directly with patients, families and medical professionals impacting one life at a time. Get


Finally, Celebrate all we are doing, together, to Conquer CHD!

Always Enough – Rebeka Acosta

In our last post on the series of gratitude, we hear from Rebeka Acosta. Rebeka recognizes how there are so many people to be grateful for, and how those people form a community and help you through the frustrations of life. 

Gratitude turns what we have into enough. -Unknown

At the end of any given day, when the dragons have been slayed, I crash into a puddle of physical and emotional exhaustion. Special needs parenting is hard work and it is terribly easy to let it swallow you whole. There are far more places to hide and wallow than there are rainbows to jump through.

And that is precisely why it has to be enough.

Oh, let me be a part of the narrative

In the story they will write someday

Let this moment be the first chapter.

Where you decide to stay

And I could be enough

And we could be enough

That would be enough

-Hamilton the Musical

It took me a few years to truly welcome the joys and pains of parenting special kiddos. I suppose it is easy enough to find gratitude in the things that make life easier, but as the child of a social worker and teacher, I am always drawn to my fellow humans. No matter how quick the moments come and go, I’m always trying to find the bright spot.

Every year as the holiday season begins, I love addressing cards to friends and family. As I sat at the kitchen table late one night last week, with the dogs curled at my feet, one of the boys appeared in tears. My initial internal reaction was frustration. Everyone was finally in bed. It had been a long day. Couldn’t I get just one hour of peace to address these cards?!

I took a deep breath. Ten minutes is enough, I thought. It will just have to be enough.

He crawled into my lap even though he had far outgrown it. He whispered quietly and asked who the cards were for. We spent the next hour talking about each person and adding a few to the list. This morning I revisited the pile of cards and sitting on top were the five my kiddo had requested, with a sticky note telling me why they were important.

Dr. K: for being my first doctor and teaching Mommy to take care of me

Dr. Becky: for saving Kato’s life (his dog)

The Apple Store: for cheering for me and teaching me to code

Dr. J and my Boston team: you helped me live

Inspirada (our neighborhood): for being my home

May you each find gratitude in the connections you forge and mountains you summit. May you slow down and find the bright spots in the simple moments. And may it always be enough.

 

Rebeka Acosta lives outside Las Vegas with her husband, two heart warriors and
two Great Danes. A researcher by nature and healthcare finance coordinator by
training, she enjoys keeping up with congenital cardiac literature and always
reviews insurance claims line by line. She recently passed the national exam to
become Nevada’s first Board Certified Patient Advocate.
Before relocating to Nevada, Rebeka was a founding member of the Washington
chapter of PCHA. She now volunteers on the National Steering Committee and
enjoys attending the annual legislative conference and transparency summit. She
is especially invested in advocacy for adopted patients and patients of color.
Rebeka welcomes connections at racosta@conqueringchd.org.