Ethan

Ethan was born July 11, 1998 with a congenital heart defect called VSD. He received his first pacemaker at the age of 4, another 2 at the age of 9 and will have his 4th pacemaker replacement surgery in April. He is nothing short of amazing. We are so thankful for the strength and courage he has shown everyday of his life. This kid has been through it all. He lives life to the fullest. He plays baseball, rides motorcycles and loves cliff jumping. He is in his sophomore year of college and wants to be a nurse to give back. I am so happy to say I am a proud heart warrior Mom!

-Dawn White

Bryana Kennedy Walker

At 20 weeks in utero, my baby was diagnosed with an Interrupted Aortic Arch, VSD and Aortic Stenosis. Bryana Kennedy Walker was born September 25, 2016 at Advocate Christ Hospital under the care of Dr. Michel Ilbalwi, Bryana underwent her first open heart surgery at 10 days old on October 5, 2016 to repair her Interrupted Aortic Arch and Aortic Stenosis. Bryana came home on continuous oxygen, an NG tube for nutrition and over 12 meds to be given daily with daily weights. In Nov 2016, Bryana suffered a stroke, rendering Right Sided Weakness to upper and lower extremities. At almost 6 months of age after a cardiac catheterization, Bryana needed her second open heart surgery on March 9, 2017 to repair her VSD and insert larger shunt. Post-op, Bryana left lung collapsed, requiring Echmo for 13 days. A chest ultrasound revealed a Chylothorax, requiring a chest tube to her left chest wall to relieve fluids. Continue reading

David

David was born on August 2, 2006. He is a twin. At my 18 week ultrasound the tech couldn’t find his aorta and the four chambers of his heart were not the correct size. We were referred to Dr. Goble. As she was doing an ultrasound she kept saying, “I can’t believe they found this”. Normal ultrasound techs are not trained to see that much detail in the heart. We were referred to UofM Mott. David’s twin Matthew is completely healthy.

David was diagnosed as HLHS until he was born. We lived in Lansing and due to David’s heart and twins we were scheduled for a C-section. Once David was born his diagnosis changed to Shone’s Syndrome. He had ADS, VSD, Coarctation of the aorta. He also has issues with his aortic and mitral valve. His first surgery was when he was five days old. He’s had a total of four open heart surgeries and two caths. He has been surgery free since May 2012 and isn’t even on any medication. Other then his learning disabilities and that he’s super skinny you wouldn’t even know he had anything wrong with him!

-Sarah Shoemaker

Songs of Love for the Heart

“When words fail, music speaks.”

Once said by Hans Christian Andersen, best remembered for his fairy tales like The Little Mermaid and The Snow Queen that inspired Frozen, this renown Danish writer understood the importance of music.

With any serious child illness, there are times when words fail us. PCHA was asked to try out a product that steps in for your child in these moments. It’s called Songs of Love, a nonprofit foundation dedicated to providing personalized uplifting songs, free of charge, for children and teens currently facing tough medical, physical or emotional challenges. At this early stage in our 3 year old daughter’s journey with CHD, we want to instill the fact that her scar from open heart surgery is something to be celebrated. It is a beautiful reminder that she is with us, happy and healthy. So we requested a song for her.

The process was very simple. We went online and filled out the form. We waited five weeks and received an email that it was complete and on it’s way in the mail (and to note, I appreciated that they realize to a young child, physically receiving this gift gives it greater anticipation and awe versus opening an email, though you can request a digital file be sent). And then we waited.

As my husband and I are both lifelong musicians, we weren’t expecting the next masterpiece or top 40 song, but we also weren’t expecting her reaction when we played her personalized song. When filling out the form, I had put in more than enough special interests, hobbies and favorite things to give the musician something to work with, and I also was very specific in that she loves a heavy beat she can dance to, pop or rock, noting that she really loved the song Immortals (which we discovered while watching Disney’s Big Hero 6). So when we popped the CD in and it began to play, we just had to smile at the instant burst of excitement and energy as she twirled, danced and bopped around for her entire 3 minute song. And then we knew we would be singing it for weeks, when she told us to replay it three more times in a row.

Words sometimes fail us, especially in trying to explain to young children about a complex condition, and in our case, how to embrace a lifelong journey with CHD full of the unknowns that await. Songs of Love is a fun resource that PCHA members find fitting for younger children. While we cannot fully explain to our daughter just how miraculous her repaired heart is, and how her scar is a beautiful reminder of that, Songs of Love helps her understand this in a small way as someone wrote a special song, just for her, in celebration of her heart.

To request a free, personalized song and for more information, visit Songs of Love.


Frances volunteers as the blog coordinator for PCHA. She graduated from USC and previously worked in film, marketing, and software consulting. Frances resides in California with her husband and daughter – who was born with severe mitral valve prolapse and a VSD and underwent open heart surgery at 8 months old.

Transparency Blog Series Recap

For the month of July, PCHA recognized the importance of transparency. Our goal is to inform, educate, and empower patients and families to actively participate in data-driven, shared-decision making. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness to make an impact. Volunteer, join our advocacy network today, and connect with us on Facebook! In case you missed a post, below is the full Transparency Blog series:

Passion and Progress: A Provider’s Perspective

A Life Raft: A Parent’s Experience using the Guided Questions Tool

A 2nd Opinion: Finding the Right Care

A Lesson in Learning To Be a Better Patient

The Importance of Information to Support Shared-Decision Making

Fathers Blog Series Recap

Your voice matters. For the month of June, PCHA recognized dads of children with CHD through our Fathers Blog series. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness to make an impact. Volunteer, join our advocacy network today, and connect with us on Facebook! In case you missed a post, below is the full Fathers Blog series:

A Story and a Scar: Rob uses his talent as a writer to share his story

Making the (Heart) World a Better Place: Chris uplifts fathers from his own experiences

A Father’s Loss, and Life After: Trey tells his journey in losing his son to CHD

A Letter To My Son: Nolan writes a heartfelt note on Father’s Day

Father’s Q&A Panel: Four incredible dads of kids with CHD answer relate-able questions

Being Present: Bill shares how he found a way to “fix” his family’s situation

 

Mothers Blog Series Recap

Your voice matters. For the month of May, PCHA recognized mothers of children with CHD through our Mothers Blog series. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness to make an impact. Volunteer, join our advocacy network today, and connect with us on Facebook! In case you missed a post, below is the full Mothers Blog series:

Mother’s Q&A Panel: Mothers of kids with CHD answer relate-able questions

A Thank You Note to Our CICU Nurse: Amy writes a heartfelt letter to her son’s nurse

Expecting a Rainbow Baby: Pregnancy After CHD: Jen tells her current journey of pregnancy after CHD

Prevailing Over the Unexpected: Jess shares how CHD has shaped her perspective on motherhood

Finding the Spirit of Mother’s Day, Every Day: Margaret speaks from experience on relieving stress

A Mom’s Promise of Hope: Tori shares about finding hope after loss

Mamas, May the FORCE Be With You!: Jennifer uplifts mothers using the F-O-R-C-E

 

Mother’s Q&A Panel

Throughout May the Pediatric Congenital Heart Association is honoring Mothers by covering relatable topics through our guest blog posts. To kick off this month, we have five amazing moms of children diagnosed with CHD joining us for a Mother’s Q&A Panel.

Thank you for taking the time to share with us! Let’s get started with introductions. Can you tell us a little bit about yourself?

Jennifer Kasnic: I’m a wife and homeschool mom of two, one who was born with TGA (Transposition of the Great Arteries). I learn everyday from her how disabilities can be overcome. My husband, David Kasnic, is co-founder of PCHA, and tireless advocate for Congenital Heart research.

Esther Kinney: I’m a mother to four sons and one daughter, and a registered nurse since 2009.

Gina Ten Pas: I’m mother of 4 year old John, diagnosed with HLHS, from West Des Moines, IA.

Sara Schuh: I’ve been married for 18 years to my husband Tim and we have 3 kids, 2 girls and a boy, who keep us very busy in Wisconsin! I’m grateful for all of the inspiring kids and families we have met. When I’m not doing kid stuff I spend my days at Just Orthodontics where I get to work with an incredible group of people as we create beautiful smiles for our patients of all ages.

Stephanie Dorko Austin: I’m a North Carolina native, and live in Raleigh with my husband Will and our awesome and amazing daughter, Maggie. I work as a political fundraising consultant and serve on the Board of Trustees of Follow the Child Montessori School and the development committee of the Frankie Lemmon School.

First of all, how was your child diagnosed with CHD?

Jennifer: Piper was “blue” when she was born, so she was put on a ventilator then transferred to Children’s Hospital where she was diagnosed with Transposition of the Great Arteries (TGA).

Esther: During the routine growth ultrasound, the perinatologist noted that the left side of my daughter’s heart was smaller than it should be, so he ordered a fetal ultrasound, which is where we received the diagnosis.

Gina: It was a routine ultrasound around 20 weeks gestation. You know, the one when you find out whether a baby boy or girl is joining the family. The days following diagnoses were very sad but we were happy to discover that it was a little boy growing inside me.

Stephanie: One day after her birth, she had a heart murmur.

Sara: A disturbing heart murmur was found at a doctor’s appointment for strep throat and after several more appointments her CHD was discovered. She was 4 ½ years old.

Looking back on finding out your child’s diagnosis, what is one thing you’d tell a mother who has just learned her own child has a CHD?

Stephanie: You are not alone, there is a community of heart mamas who can and will help you.

Jennifer: Ask your doctor a lot of questions to ease your anxiety. There are many good outcomes, so try to stay positive.

Esther: Initially, I would listen and allow her to lead the conversation. I would answer as many questions as I could, and then help her find answers for the others.

Sara: Take care of you, which will be the furthest thing from your mind during this time. The last thing you do is think about what you need, but your child and your family will need you to be at your best.

What ways do you manage your worry or stress from dealing with CHD?

Sara: Talking to other parents and hearing their journeys, what has worked for them and what has not. Sometimes it’s hard to know which way to turn and someone may have just the answer you need, or be able to send you in the right direction for support.

Esther: Connecting to others through Facebook support groups and the subsequent friendships are the primary ways I have dealt with the stress. I also continue to engage in regular therapy with a psychiatrist and psychologist.

Gina: I cling to God’s promises. I remind myself that I am right where I need to be and I’m caring for one amazing fighter.

Jennifer: Talking with others with CHD children, keeping current on Cardiology appointments, and prayer.

And, what do you love most about your child?

Esther: Every single thing! If I had to choose one thing, I would pick her smile. The right side of her face is permanently paralyzed, but her lopsided smile is absolutely perfect!

Stephanie: Her huge personality and awesome sense of humor.

Jennifer: Piper is quiet but has a true fighting spirit. She is kind and patient.

Gina: I love my son’s humor. We are still celebrating April Fool’s Day at our house!

Sara: How her strengths shine so brightly through her eyes right to her very compassionate soul. Her concern for others is heartwarming!

Is there anything you wish you could have done differently with your child’s care?

Jennifer: I wish I could have been informed at birth of the severity of the problem, instead of waiting for hours without my child. I also wish that I could have held her more before she was transferred to Children’s.

Gina: I wish I would have found a trusted team of doctors sooner than what I did. Everyone among the knowledgeable was telling me to get a second opinion, but I was too overwhelmed to act.

Esther: I would not have allowed providers to make me feel badly about choices I made regarding the location of her care.

Sara: Looking back I wish that I would have asked more questions and reached out to other families for their support.

What has been your biggest struggle in dealing with CHD?

Esther: Juggling the responsibilities of motherhood. In addition to my daughter, I also have four sons. I wanted to make sure that they didn’t feel lost in the chaos.

Gina: Navigating the complexities of the pediatric heart world. I’ve been in this world for five years now and I still can’t wrap my mind around it.

Sara: Like many, I felt guilt that I did something wrong, that this happened to her and that she went undiagnosed for so long fighting to survive and through all those appointments and my endless questions somehow her CHD was still missed.

Jennifer: Probably the developmental delays that we have experienced but were not warned about. It was frustrating and I felt at fault.

As CHD impacts the entire family, what ways have you supported your spouse or CHD siblings?

Jennifer: Trying to stay positive in tough situations. As for siblings, trying to make them feel special at other times when they are not receiving as much attention.

Esther: I translate medical terminology into understandable terms. I researched the child life program at the hospital and connected my children with the resources, and I coordinated therapy for one of my sons – he no longer needs it.

Gina: I let my other children know that they too are of utmost importance to me and I love them very much. We have family meetings when we need to pull together for our little heart warrior.

Sara: Keeping everyone on the same page and informed about what’s happening with any of her appointments.This alleviates some of the fears siblings and other family members may have. We also make time for her siblings with us. They were feeling like she was getting all this special time with us, even if it was for doctor’s appointments.

How do you handle disappointments from any physical limitations your child may have, especially when your child compares him or herself to peers?

Jennifer: Try to remind her that she is special just the way she is, that she has overcome a lot and even though some things are harder, she is not a failure.

Gina: I’m not gonna lie, this is tough to see. He’s only four and he has now caught up with his peers but when he was recovering from his stroke, it was unbearable at first. I would give myself a mental pep-talk, reminding myself that God is one step ahead of us and doing what’s best for all of us.

Sara: She gets frustrated when her body cannot keep up with her, but I continue to encourage her to do as much as she can. We try to encourage her that everyone has different skills and to use what abilities she can contribute.

Esther: My daughter is not old enough to be aware of any differences. I expect the most difficulty will come from the social stigma associated with her face instead of her heart condition.

How do you prepare your children for questions or comments about their scar(s)?

Stephanie: We have always talked openly about her surgery and her scars. My supportive sister who has Tetralogy of Fallot (TOF) has never had any trouble with hers, so I have been very open and honest about it.

Gina: Just this morning, for the first time, I heard my 4-year-old heart warrior tell his older brother that he doesn’t like his scars anymore. I melted when I overheard his older brother say, “John, that’s what makes you tough! I wish I had cool scars like that!”

Sara: Her scar is a very big struggle for her and she goes to great lengths to cover it up any chance she gets. We continue to tell her that it is a sign of her strength and that we, and those who love her, are very proud of her. That scar may not feel like a gift but it is. The gift of life! As a mom, it is a reminder that when she’s upset about it, to try to be understanding of just how different it can make her feel and to be supportive as she learns to tell her story and share her journey to help others who struggle as she does.

Jennifer: Explain to her about her surgery (why the scar is there), that it is a sign that she survived and she should not be ashamed of it. Be proud!

As CHD is a lifelong condition, what ways are you preparing your children to care for their hearts into adulthood?

Jennifer: Educating her on how to care for her own general health, but also to keep up Cardiology appointments and dental appointments. Her health is not something that she can overlook.

Gina: When I give him his medicine, I say the individual name of each med right before I give it to him. Since some of these meds will be with him throughout his life, I think it’s good for him to learn the name as soon as possible.

Stephanie: We talk a lot about healthy living and we make her annual cardiology appointments as normal as possible. Having my sister as a role model helps a ton.

Sara: We encourage her to ask any questions she has at any of her doctor’s appointments and let her know how important her care is to us, but also how she must feel comfortable with talking to the doctors and their teams about what makes her heart different, and that working as a team is the best for her so her concerns matter.

And lastly, what is the greatest thing your child with CHD has taught you?

Jennifer: Be brave in the face of overwhelming odds and trust others.

Esther: Never underestimate a mother’s intuition when it comes to the medical needs of their child.

Stephanie: To treasure every minute and every day with her and with everyone I love.

Sara: That just when you think you have given everything you have somewhere deep inside you have more and that together you will get through each hurdle.

Gina: I’m humbled. I no longer have all the answers. My life is not as structured as it used to be. Somehow, in the midst of beeping machines and heart monitors, life became more peaceful, more beautiful, and more meaningful than before.

Thank you all for your insight and words of encouragement. If you’d like to join mothers, parents and those affected by CHD help conquer CHD, become a part of the PCHA community by signing up to join our network, and remember to follow us on Facebook!

When a Cause Finds You

The Pediatric Congenital Heart Association is pleased to welcome Jonathan Corwin as our newest blogger.  In just a few short months, Jonathan has dove in and participated in many PCHA activities from advocacy, to fundraising, and now blogging.  Welcome, Jonathan, we are so grateful you found us! If you would like to be an advocate, like Jonathan, sign up to join our CHD advocacy network, today!

There are times when you find a cause and then, there are times when a cause finds you.

My son, Lukas, was welcomed into this world in June of 2011 looking as healthy as his brothers before him, even though we knew something deadly was lurking. Having already been diagnosed with Truncus Arteriosus, it was a moment that forever changed our family and brought about experiences I never could have imagined. Lukas is why I advocate on behalf of Congenital Heart Disease (CHD). After watching my own personal heroes in scrubs and lab coats fight to save his life, how can I not? Many CHD survivors cannot advocate for themselves. How can I not?

I chose to attend the 2016 Congenital Heart Legislative Conference in Washington, D.C. earlier this year with Lukas, and it was an extraordinary experience. I was inspired among so many survivors and their loved ones, a collection of people, many of them strangers to each other, all sharing a common bond and mission. The determination to fight for this worthy cause energized the room. The conference was an opportunity to share our stories and command action with Members of Congress elected to represent us. And that is exactly what we did. There were stories filled with joy and those filled with heartache, stories of second chances and those we have lost. Sharing Lukas’ story in the fight for CHD advocacy has been one of the most incredible and rewarding experiences of my life.

Lukas Corwin

After Lukas was born, I watched helplessly over the next two weeks as he went further down the path of heart failure, while his doctors gave the rest of his tiny body as much time as possible to grow stronger. He was immobilized and intubated. As if this was not already terrifying enough, he stopped breathing due to a nerve response triggered by the breathing tube. Alone in the room with him the first time this occurred, I panicked as his color drained, alarms began to sound, and medical personnel rushed in from every direction. They began their work and openly pleaded with him to take a breath. I can honestly say I have never been so terrified in all my life. This scene was repeated a half dozen times over the next few days leading up to his first open heart operation. He came through this ordeal with flying colors and we were soon able to join him in recovery. My little boy was less than a month old and already he was the strongest person I had ever met. He underwent a second repair in 2015 and continues to be a shining example of perseverance.

For the first time ever, Lukas met someone with the same heart defect at the conference. It was a very personal moment. My son beamed while showing this young lady his scar, and she asked if she could FaceTime with him and keep in touch. I was so touched. I was forced to hold back tears. At 17, she is wise beyond her years. It is people like those we met at the conference and on this journey who will bring about change in outcomes and patient care.

lukas2

Sharing stories likes Lukas’ not only brought us closer at the conference, but were a window for Members of Congress into the importance of fighting for this cause. 160 attendees participated in meetings with our legislators as we implored them to cosponsor the Congenital Heart Futures Reauthorization Act of 2015 and make appropriations requests relevant to CHD for the Centers for Disease Control and the National Institutes for Health. We made a lot of progress and laid the groundwork for even greater successes in the future.

lukas3

I did not find this cause, this cause found me. Now, I feel the responsibility on behalf of my children, and those other CHD survivors who need a voice, to use every tool at my disposal in this effort. Too often we have potential champions for this cause who have never been asked or given the opportunity to lend their voice. I am here to ask you to lend yours. Will you join the fight for CHD advocacy and help introduce others to this life changing journey? Congenital heart disease is the most prevalent birth defect leading to infant mortality in America. That simply is not acceptable. Not by any measure. Together, we will build a coalition of legislative champions who strive to give healthcare professionals and researchers every tool they need to save lives and improve patient care.


Blogger_Corwin_JonathanJonathan Corwin lives just outside Indianapolis, IN with his 3 sons – including Lukas, who was born with Truncus Arteriosus in 2011. In addition to his advocacy on behalf of congenital heart disease, Jonathan was previously an aide to United States Senator Richard G. Lugar. In his spare time, he enjoys taking daytrips with his children, Indianapolis Colts football and Indiana Pacers basketball.