National Reading Month: You’re Here for a Reason

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 3rd post of our series, PCHA’s Jessica Chenevert talks with us about one special book. Read on to hear why You’re Here for a Reason holds a special place in her heart.

Barrett checking out his book

When I bought this children’s book, I had no idea that the first time I would read it to my son, Bear, I would be brought to tears. Never in my life has a book made me cry. The book is titled, “You’re Here for a Reason,” and it’s written and illustrated by Nancy Tillman. I decided to buy it, because I loved another one of her books, “On the Night You Were Born,” which Bear had received as a gift for his first Christmas. Not only does the book have a beautiful rhyming phrases, but it is written in a way that floats off the pages and can truly relate itself to your life. In my case, the words reached through the pages and spoke to me about Barrett’s journey with Congenital Heart Disease. The book, as far as I know, has no relation to heart disease and wasn’t written with a heart kid in mind, but every word I read applied to it perfectly.

Barrett is here for a reason. Every one of us is. Nancy shows her readers how each of us fits into life’s big picture and how this world would simply be incomplete without each of us in it. As we sat there after reading the book, I held my sweet, strong warrior and rocked him back and forth and thought it was such a perfect gift for children and families living with CHD.

One of the fun things I am able to do at PCHA is pick a quote and pair it with photo to create an inspirational design of sorts. Naturally, I created one using a passage from one of these great books and posted it on social media. To my great surprise, the author herself engaged in the post. I immediately reached out to her on my personal account about my love for her books and sent her a picture of Barrett.

Of course, she responded to those also, and I was overjoyed. A small interaction, but one that would stay with me. Little did I know it would not end there. Last September, I had the privilege of being honored at the Congenital Heart Gala in Milwaukee with the Heart Hero of the Year Award. Our Director of Programs, Amy, knowing my love for Nancy Tillman books, reached out to the New York Times best-selling author so that when I walked up to accept the award I would also have a copy of “You’re Here for a Reason” made out to Barrett, complete with a signature.

Ezra on his 2nd Birthday

Giving parents words that can match the feelings they have for their children is Nancy Tillman’s goal in creating these books. Before I even knew about that, I had felt it. I had already decided it would be the book I wanted to gift to other amazing little warriors and their parents. Just one month earlier, I had given it as part of a gift from Barrett to his buddy Ezra on his 2nd birthday. Now, Barrett and Ezra were born roughly two weeks apart, they had all the same newborn clothes, underwent surgery at the same hospital, and were both living with CHD. Ezra’s battle had been particularly rough, but Ezzie’s mom and I liked to call them twins, because even with different defects, different struggles, and ultimately different outcomes…they were brothers on this journey.

This book has a special place on Barrett’s book shelf and in my heart. Each time we read it, I hope he knows how truly amazing and strong he is and how much he is loved.

 

 

 

Note from the Author:

Dear loving parents,

My own grandchild was born with a hole in her heart, so I know much of the struggle that you are going through.  She is well and happy now and that is what I wish for all your precious children.  I wrote You’re Here for a Reason to speak from your heart. I so dearly hope it does.  Your child is miraculous.

Blessings,

Nancy Tillman

 

 

 

 

Jess lives up the North Shore of Minnesota with her husband Nolan and their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. With a background in several aspects of the medical field Jess. Joined PCHA shortly after Barrett’s Birth and subsequent diagnosis. Now a stay at home heart mom she strives to be an active volunteer as an advocate, committee member, and Social Media Coordinator for PCHA.

National Reading Month: A Q&A on The Love of Reading with Members of the CHD Community

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 2nd post of our series, PCHA asked members from across the spectrum of our CHD Community to tell us what they love about reading. Sharing with us this week, about what reading has brought to their lives, are Megan Setzer from the perspective of her son Caleb, born with Hypoplastic Left Heart Syndrome, Alison Connors, mother of two heart warriors, McKenzie and Archer, and Carol Raimondi, an Adult CHD patient with Congenitally Corrected Transposition of the Great Arteries.

 

PCHA:  Why do you love to read?

Megan + Caleb: I’m still learning to read. I love being read to. I like feeling like I’m part of the story.

Alison: Reading is a great escape for me. When I read I am able take time to myself to decompress. Life can be stressful and having that outlet is so important. Reading is probably the most important skill you learn besides math.

Carol:  I love to read because it relaxes me. It allows my mind to focus on the story, and take me to wherever it is set. I can be in a place where the characters are, and that lets me temporarily forget any stresses or worries I have going in my life. 

 

PCHA: Where’s the best place to settle in with a good book?

Megan + Caleb: Anywhere. My favorite place is to snuggle into my bed and look at books before I go to sleep at night.

Alison: The best place to read a book is anywhere! A good book can be read in the loudest place imaginable, because once you start reading you are taken to a different place anyway!

Carol: I love stretching out in bed when I read. Being somewhere with little distraction is key!

 

PCHA: What’s the best part of your favorite book?

Megan + Caleb: Everything! I don’t really have a favorite.

Alison: For me, I like to read historical biographies of famous figures, like Abraham Lincoln, Che, Jackie O and Benjamin Franklin. Reading about the lives of historical figures and about our past customs in American history is a favorite of mine.

Carol:  I really don’t have one favorite book. Anytime I can relax and read for an extended period of time makes me happy!

 

PCHA: What character, from any book, do you most identify with?

Megan + Caleb: There is a small part of all the characters that I can identify with. I am strong like the Super Heroes that I read about and I’m silly like the funny creatures in the Dr. Seuss books.

Alison: When reading historical biographies I don’t necessarily identify with the characters I read about, but one thing about reading about someone’s history is that the past does sometimes repeat itself so I can see how America and the world hasn’t really changed as much as we all assume it has. Technology has changed but as human beings we are still fighting over the same things, fighting for the same things and uniting about the same things. It’s very interesting.

Carol: I tend to identify with any female lead character. Someone who has obstacles to overcome time and time again, but stays strong and shows perseverance. 

 

PCHA: Do you have a favorite author or genre? What do you like about that style?

Megan + Caleb: Dr. Seuss is my favorite author, because his books are funny.

Alison: Historical biographies are pretty much all I read. I figure I’d like to learn something while I am making the time to read. Abraham Lincoln is probably one of the most interesting people I have ever read about. How he ran the country, how he united with his rival, his views on leadership, and work ethic really impressed me. As a person you are always evolving, so whenever I can learn something from reading, I feel accomplished.

Carol: I tend to vary on the genre I read. Sometimes I will read medical non-fiction, as I enjoy learning about disease management and how others have handled living with chronic illness. Other times, I prefer to go the exact opposite and stay light by reading fantasy books. Anything with a vampire or werewolf will suffice! It is nice to escape reality and let my imagination go wild!

 

PCHA: Have you ready any books involving characters with CHD? How’s they hold up to your own experience?

Megan + Caleb: I have read the book, Zipline…It’s about a girl who had a heart surgery, and she is all better now.  Unlike this character, I have had multiple heart surgeries.  I also have a hard time keeping up with my friends when they are running around the playground.

Alison: I have not yet read any books involving characters with CHD! I will have to look into that! Every CHD story is different, which probably why CHD is not as well-known as I would like. Having over 35 different types, so many different outcomes, and sometimes having multiple CHDs really makes every Heart Family’s perspective completely unique, but I think each of us, whether your child’s ASD closed by itself or whether you child is on his/her 4th surgery, we’re all the same. We’re shocked, worried parents who strive to give our children the best life possible, and we’re not alone in this CHD heart journey. Heart parents and patients are pretty passionate people, so I think I would definitely relate to a book with a CHD character.

Carol: I have read several books with CHD patients as the main character. In some cases, I have identified completely with the feelings they have shared, to the point where it hits too close to home, and I need to put the book down for a few days. In other circumstances, I felt like the CHD patient did not give a good representation of what life is like with heart defects. It was either overdramatized or made to seem like it wasn’t a big deal. I prefer a happy medium between the two.

 

PCHA: What’s missing from bookstores? What book would you like to see on the shelves?

Megan + Caleb: I don’t know what’s missing from the bookstores, because most of my books come from the school Book Fair, in the mail, or are on my tablet. I love it when the Book Fair comes to my school and seeing all the different types of books that they have!

Alison: We lost my husband’s Mother, Nicky, suddenly last year. She was a fiction writer. She worked hard for her kids, and, when they were grown, she worked hard for herself. She went to Columbia College in Chicago and worked there as well. She was the coolest person to have as a Mother-in-Law; every time I talked to her she challenged my thinking, inspired me to be a strong woman, and always gave my husband a hard time, which was fun to see! I always thought we would have more time with her. I would love to see her works put into a book. She always talked about having so many works, pages and pages of unfinished work, a life unfinished. Maybe one day, as a family, we can make that happen. I would love to sit one day, open a book by Nicky Chakalis, and read it to the next generation of our family. For me, that’s what is missing on the bookshelves. 

Carol: I would love to see more books geared towards teens on living with chronic illness, whether CHD or not. I think this an important age group that needs as much information as they can get.  What book would I like to see on the shelf? A manual for life with CHD, from pre-natal diagnosis through adulthood, with chapters specifically for family members, friends, spouses and health care providers. That’s not asking too much, right?

 

Megan Setzer is a mother of a child with Hypoplastic Left Heart Syndrome. With a background in Social Work, it has become her passion to provide support and resources to those impacted by CHD.  Shortly after her son’s birth in 2009, Megan chartered Mended Little Hearts of Winchester as a way to connect area families and to offer support and resources. Under her leadership, the group was honored with the 2012 MLH Group Excellence Award and it continued to grow its network. In 2013, her group expanded geographically and became Mended Little Hearts of the Shenandoah Valley, serving families in the Shenandoah Valley of Virginia and Panhandle of West Virginia. She was elected as the Mended Little Hearts National Board Director in 2013, where she served until December 2016. She is currently serving as a Board Director for the Pediatric Congenital Heart Association.Megan has a Bachelor’s of Social Work from James Madison University, graduating in 1999.  She worked for almost 10 years as a Medical Social Worker, and is now employed in the health technology field as a Clinical Advisor, specializing in care transitions. When she is not volunteering, she is kept busy by her husband and two boys. She loves to read and crochet.

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.

 

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) Vice President and State officer, after a recent transition from MLHC. Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.

A Letter To My Son

PCHA wishes all dads a Happy Father’s Day! We’re happy to share this letter written by Nolan Chenevert, who celebrates his second year as a dad to his son Barrett “Bear”.

Dear Barrett,

I remember so vividly how excited I was when your mom first told me that I was going to be a dad. I also remember how excitedly terrified I was the first time I held you. You were now something that I had to take care of, care for, and teach (thankfully, Mom is here to help!). I was officially a dad, your dad! My heart was so full and my mind was racing with all of the possibilities that your future held.

After a very moving and exhausting day (especially for mom!), things turned around quickly. You turned blue, were having trouble breathing, and they wanted to transfer you to another hospital. It was like I had just been repeatedly punched in the gut. I ran the three blocks to where they had taken you. I stopped in the hallway outside your room and froze. You were right there, but I couldn’t go in or talk to you, I couldn’t do anything for you. I’ve never felt such an incredible feeling of being so powerless. A team of nurses and doctors had your incubator surrounded and when I was finally able to see you, I noticed all of the tubes, wires, and tape that now covered your body. I just sat there in that hallway, trying to convince myself that this wasn’t real, that you were going to be just fine, that your mom and I were going to be taking you home soon. Your plane had finally arrived and it was time for you to get on it, without me.

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Two major heart surgeries, multiple procedures, and dozens of doctor appointments later, you’re here doing exactly what I imagined you would be doing. Your first day of life gave me such a wide range of emotions that it might seem like the days since would be boring, but every day is its own wild ride. I get significantly less sleep than I ever imagined I would have, but I can’t wait for my first hug in the morning. I shake my head when you get into one thing after another, but I love the smile you get when you’re having so much fun. I get to pick up toy cars and dinosaurs just to get them thrown right back out again, but you are learning to help. All of the trade offs are worth it, because you are here.

Today, I feel the greatest pride when I get to show you off and brag about how great you are doing. Being a parent is a feeling that is unparalleled by anything else I’ve ever experienced.

Throughout my life, I have always looked forward to celebrating Father’s Day with my dad.  We would always get together with your Grandpa and spend the day trying to do things we thought he wanted to do to celebrate him. I have nothing but happy memories of Father’s Day, both as a son and grandson, but now as a dad. Last year was my first Father’s Day with you and I’ve determined that it isn’t just about being celebrated by others for being a dad. It is just another day to celebrate the fact that I get to be your dad.

I couldn’t be prouder to be your dad. I love you!

Dad


12004727_10106681235387660_8976356233192569832_nNolan lives in Duluth, Minnesota with his wife Jess (Volunteer Social Media Coordinator for PCHA), their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. Nolan is an elementary school teacher currently teaching 4th Grade. Nolan enjoys baseball, golf, playing guitar, kayaking, and spending time with his family.

A Thank You Note to Our CICU Nurse

Nurses are an integral part of CHD care, and we are so thankful for them! During National Nurses Appreciation Week, in conjunction with our Mothers Blog series, we share a letter from a mother to her child’s nurse.

To the nurse who taught me how to be a new kind of mother,

We raced through the CICU doors, but I stopped short as we entered the room I was told contained Nicholas. It was just an hour earlier when I kissed my son goodbye, as he was placed in an isolette for helicopter transport to another hospital. To save his life. Just two days earlier, I had been snuggling, nursing, talking to my seemingly healthy newborn. This is how I knew motherhood to be. And in the blink of an eye a heart defect was discovered, and he was suddenly critically ill.

Walking into an unfamiliar room a hundred miles from home, I didn’t see my baby. What I saw was a myriad of tubes running from foreign machines to a motionless body, suspended on a platform, highlighted by an overhead warming lamp. I didn’t hear my baby. Instead, I heard a cacophony of pumps and beeps contributing to the artificial environment.

Nick Hospital

When I saw nothing but a surreal science experiment, you saw my son. You saw hope and potential. So, you loved him, talked to him, sang to him. And then you taught me to do the same. You taught me how to talk to him as if he could hear me. You taught me how to caress his forehead and hold his hand. You shared your hope with me, and taught me to do the same. You were the mother he needed at that moment, the mother I never imagined I would have to be, and you taught me how to be this new kind of mother, too.

Thank you from the bottom of my heart. Happy Nurses Day and Happy Mother’s Day. On that day, you were both.


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Amy is mother to Nicholas whose critical coarctation of the aorta was discovered through early CCHD screening research in 2005. The strength and support of the CICU team helped lay the foundation for a career in CHD patient advocacy. You can read more about Amy here.

Volunteer at PCHA!

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The Pediatric Congenital Heart Association recognizes the vital importance of volunteers to ensure that we can achieve our mission – to Conquer Congenital Heart Disease.  It takes a community coming together around education, research and awareness to make an impact!

Ready to Volunteer?  Complete our volunteer application, today!

There are many ways to get involved:

Administrative Support – Help with data entry, writing letters, licking envelopes, all the little details that contribute to the big picture of empowering families and Conquering CHD!

Blogging – By making us laugh, cry and touching our hearts, our team of bloggers makes it personal with their words and pictures about experiences so many of us can relate to.

Communications and Marketing – Help us create and communicate the greatness that is PCHA! From graphic design to campaign execution help us tell the story of PCHA.

Donor Development – As a non-profit, PCHA relies heavily on the support of our individual donors.  Help us work with our donors to keep them informed, engaged and supportive of the work of PCHA!

Event Planning – “I wanted to plan a wedding, without the marriage part.” Attention to detail will ensure success for our events like our CHD Galas, dinner fundraisers and conferences.

Fundraising – Help us put the “fun” in Fundraising!  From Jamberry Nails to a birthday challenge help us raise much needed funds that support our vital programming including our Suggested Questions Tool for parents and Transparency Summit Series.

Grant Writing – This takes a special talent.  If you’ve got it, we need you!  Help us secure public and private dollars to support our key programs!

Industry and Corporate Development – Are you connected in the medical or business world? Please consider working with PCHA staff to grow relationships with industry and business partners to broaden our program support.

Legislative Advocacy – Whether it is calling, emailing, or visiting their lawmakers at home or in Washington D.C. the Pediatric Congenital Heart Association advocates are an amazing bunch!

Patient Education – Help us design tools and materials to empower patients and families that meet desired health literacy and diversity standards.

Social Media Ambassador – The impact of the passionate and engaged volunteers who like, share, re-tweet, post and tag has not gone unnoticed.  Our engagement ratio is higher than nearly all other CHD organizations out there!  Using social media to spread awareness and knowledge, indeed is a powerful form of volunteerism.

Volunteer Coordination – If you are a people person, than this is for you! Help us keep our many volunteers engaged and excited about PCHA and all that we do!

If you are interested in volunteering or would like more information, please complete the volunteer application, today!

Volunteer

Happy 2nd Birthday, PCHA!

Its our Birthday Birthday

We’re Celebrating!
Our 2nd Birthday and
Two Years Conquering CHD!

Look how much we’ve grown:
This list highlights our programs that have had a national impact in the last year, including the meaningful Summit on Transparency and Public Reporting** and our in demand Guided Questions Tool.Our programs work to:
Give Knowledge
  • Hosted Congenital Heart Legislative Conference*
  • Hosted Summit on Transparency and Public Reporting**
  • Participated in Hospital Site Visits
  • Presented at National Conferences
  • Launched Questions to Ask your Provider
  • Developed our Advocacy Toolkit
Give a Voice
  • Created Advocate Network Community
  • Supported Advocates to Contact Lawmakers
  • Visited Legislators
  • Informed National Policy
Give Hope
  • Promoted Federal Research Funding
  • Created Patient Centered Research Protocols
  • Shared Research Findings
  • Created Original, Inspirational Materials
  • Distribute Original Blog Posts by Parents and Patients

We need your help to continue to grow:
We want to continue these important projects, but we cannot do it without your help! Please donate to the Pediatric Congenital Heart Association to ensure we can continue to give knowledge, a voice, and hope as we work together to Conquer CHD!!

Donate Now

*The Legislative Conference was hosted in collaboration with Children’s Heart Foundation and Adult Congenital Heart Association
**Thank you to Ann and Robert H. Lurie Children’s Hospital for sponsoring the Transparency Summit

Unexpected Hero

Special thanks to Mark Gentle who agreed to share his son’s story with us. The following photo was also shared with permission.

Carter

He was scarred.  He was scared.  And now, he’s a superhero.

Carter recently underwent open heart surgery to repair a problem with his heart he has had since he was born. The surgery left a large scar down the front of Carter’s chest, along the center of his ribcage.   When the bandages were removed, Carter was devastated by the marks on his chest. So, dad posted a picture of his son, asking friends and family to show their love and support for Carter and his new look.

Carter was born with the most common birth defect.  1 in 100 babies are born with congenital heart disease (CHD).  One third of those born with CHD will require life-saving intervention or heart surgery at least once during childhood.  That’s thousands of children, each year.

Carter was concerned that he was going to look different.  What he didn’t know was that his difference was going to make such a positive impact.  In a few short days, Carter’s picture has received more than 1 Million likes and more than 75,000 shares.

Carter, you are not alone in this journey.  Thank you for sharing your struggles and making one of the largest impacts in CHD awareness history!

The Original Post Can Be Found Here. Please visit, like and share!

 

Can You Hear Me Now?

Guest Blogger Chris Perez knows first hand that even the littlest action can have a big impact. The Pediatric Congenital Heart Association offers many ways to get involved.  Click on any of the following for more information or to get involved: volunteering, contacting your lawmakers, sharing your story.  By working together, even the smallest of actions can help Conquer CHD.

 

Can You Hear Me Now?  Good.

Remember this guy?

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Yes, I’m bringing back the Verizon Wireless Guy, who used to walk around saying “Can you hear me now?  Good.”  It was all about the strength of Verizon’s network and the ability to be heard clearly wherever you are.

Stories about heart warriors are always struggling to be heard in a busy and noisy world.  Still, they need to be heard, and we want them to be heard.  As a heart parent, I’m sure you’re connected with lots of other heart parents and it seems like they’re doing some spectacular things like speaking at conferences or even traveling to lobby with government.  And you…you can barely get out of the house.  You just want to be heard.  Well fear not, heart parent: you can still be heard on a smaller – and still VERY important – scale.

It’s OK to Start Small

While your first inclination is to go BIG – this is about your child, after all – lots of big things start small.  Doesn’t a fire start with a tiny spark?  So maybe you can’t make a trip to Washington DC or to your state’s Capital to do some lobbying.  All is not lost: you can still do it at home.  Start with your Mayor or City Council.  Schedule some time to tell your story and see if your local government can help pass that story along.  You’ll find that they love to hear from their constituents and possibly even have much more time to listen to you than someone in a larger level of government.  I remember reaching out to the Mayor of Charlotte regarding a proclamation for CHD Awareness Week and in a week or so I actually received one in the mail, which was really awesome!

Local news is a great way to share your story too: tv news, the newspaper, and even those smaller, local papers are great.  People complain that the news is full of bad stories, but I promise you they love good news just as much as you do.  There’s a weekly paper in my area that has done a really awesome job of sharing my son’s journey and people do, in fact, read that stuff!

If you’re shy and those things aren’t for you, then maybe you should consider starting a blog of your own.  I can attest to the power of the written word only through a blog: it’s given me an opportunity to connect with people throughout the world.  And all you have to do is type!  Likewise I encourage you to share your story with the Pediatric Congenital Heart Association: just go to http://conqueringchd.org/ and click on “Share Your Story,” and off you go.  You never know how your words can uplift someone who needs it.

Get Involved

Weaving yourself into the lives of others is a great way to share your story in a meaningful way.  Of course, I definitely encourage you to stay involved with the efforts of the PCHA: educate yourself, share with others, and advocate for more CHD research.  Take some time to look into local groups as well: maybe it’s a patient/family advisory committee through the Children’s Hospital, a support group, or a local chapter of a group like Mended Little Hearts.  These are opportunities to support and be supported and I can’t stress enough the importance of this.  My local group is called Camp Luck and they do amazing work that involves supporting families and running a medically-supervised camp for heart kids.  They hold lots of events throughout the year where my kiddos can come and play and you know you’re in the room with family: everyone understands you.  We’ve had the chance to meet some really cool people and when we get to share in our experiences, we find we get stronger.

Maybe – just maybe – you have some extra time on your hands.  What to do with it?  Volunteer!  There are a lot of heart parents who volunteer at their local hospital and it’s a wonderful way to give back.  There is tremendous value in being a volunteer, both personally and to the organization you’re supporting.  People also listen to volunteers: if you’re passionately involved at the Children’s Hospital, for example, it can open doors to sharing your story and helping people out because that passion will show!

Make Sure Your Opinion Matters

Ok Heart Parents…let’s be honest with one another here.  After a hospital stay, you get home and work on getting back to normal.  In the mail comes…dun dun dunnnn…a survey.  You throw it away, don’t you?  Come on, admit it!

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Well I have some news for you…these surveys are important…REALLY important!

You see one of the big changes in healthcare today involves the patient experience.  There’s the realization that people come into the hospital automatically expecting excellent medical care.  Duh.  I mean you don’t go in and say things like “I hope they operate on the correct knee today!”  Good quality care is a given, and it’s something that healthcare has been touting for years.  While that’s still important, healthcare is realizing that patients and their families have to actually be treated like human beings.  Have you had a rotten experience in the hospital?  Tell someone.  Feel like you don’t matter as a parent?  TELL SOMEONE!  Hospitals now have staff who handle these things day in and day out…and it’s not a mindless complaint process: they dig into data and look into root causes of problems in healthcare…and ultimately they work to fix that culture so the complete and total experience in the hospital is the best it can be.

So where do you think the hospital staffers get their data?  You guessed it: SURVEYS!  That’s why they’re so important: if your hospital is awesome, tell them they’re awesome…it really goes a long way.  If it wasn’t the best experience, say so in your survey, because nowadays a lot of federal reimbursement for hospitals is tied to patient experience scores and goals.  So it’s in their best interest to give you the best experience possible.  Now that doesn’t mean you should demand ridiculous things from your medical team, but rather they should be treating you with human connection, empathy and compassion.  They should communicate, they should treat you as if you were their loved one, they should include you in the whole process.  If they don’t, speak up!

Help out your local Children’s Hospital by filling out your surveys and providing good, honest feedback…it’s how your story can help them improve!

It Only Takes a Spark

What does it take to have an impact with your story?  Not a whole lot.  You don’t have to go big or go home: you can start small and let the fire build.  I really want to encourage you to reach out to local media or local government, get involved in your community, and make your voice heard through surveys!

 

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

Finding Hope in Washington D.C.

Tori is  mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Pediatric Congenital Heart Association.  Here, she tells us about her first trip to Washington D.C. to advocate.

SterlingI had the most amazing experience last week while in Washington, D.C. for the Congenital Heart Legislative Conference. I met so many wonderful people who share my passion for CHD advocacy. I was able to help out a little behind the scenes and even check in many of the participants. I learned so much and am still processing it all.

We were there to meet with our legislators and ask them to support NIH research to prevent, treat and cure CHD. For $10 million in CDC funding for data collection and public health research. And for $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program. We would like them to take action by signing the Congenital Heart “Dear Colleague” letter. To join the Congressional Congenital Heart Caucus. And to submit a Congenital Heart Appropriations Request.

If you don’t understand the last paragraph, no worries. I had it explained to me and still had a hard time remembering it all. The important thing to know is that this is to support funding for research and for data collection. Research to help those we know have CHD’s treatment and hopefully one day a cure and to better detect those we don’t know have them, like Sterling. Our kids with CHD’s are becoming adults with CHD’s (which is a testament to the research already done!) and there just isn’t a whole lot of data out there for treating them.  There also aren’t very many doctors with experience in treating them. These things need to change. Supporting the above will help change that.

I was very honored to meet with our representatives and our senators and to share our stories. In my group we had 2 parents whose babies died from CHD’s, one knew of the CHD and I of course did not. Then we had 3 adult CHD patients and 1 friend of a patient. I was so nervous but they helped me out and I soon discovered that our stories are powerful. Watching the staff members come out with smiles and looks of “lets get this meeting done” turn to sadness and taking the time to ask questions and really try to understand what we were asking for and why it was so important.

Read the rest of the story, and more from Tori, here.

HLHS Dad goes to Washington D.C.; Part 1

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

 

I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

 

I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

TO SEE THE PREVIEW AND READ THE ENTIRE BLOG, visit the original post here.