Congenital Heart Defects – Issues With Heart Structure #CHDAware

 

CHD is a problem with heart

Congenital heart defects are problems with the heart’s structure that are present at birth.

As we continue to celebrate Congenital Heart Defect awareness month. Did you know that congenital heart defects change the normal flow of blood through the heart.

Here is a drawing the Pediatric Cardiologist gave to us when he was showing us what exactly was wrong with my son’s heart.  He showed us what Jacob’s heart looks like with Tetraology of Fallot, and what it will look like after his total heart repair.

drawing of jacob's heart repair

So much wonderful research and treatments are being done to improve the life of children born with congenital heart defects to give them a better quality of life.

Here is a list of the Best Hospitals for Pediatric Cardiology & Heart Surgery.

My son is a thriving 10 year old boy, who loves basketball, going on vacation, playing with friends and family, and loves music and dancing. He currently is still on beta blocker (Atenolol) for a maintenance purposes at this time.

Jacob climbing rock wall at Springhill Camp 2014

There are a lot of inspiring stories of children born with CHD, and when diagnosed early have wonderful, fulfilling lives!  They truly our our Heart Hero.

Do you have a “Heart Hero” you want celebrate? Share with us in the in comments.

Join Us In Celebrating CHD Awareness Week, Feb 12-18, 2017 here at Special & Determined #CHDAwareness

Join us in celebrating CHD Awareness week, Feb 12-18, 2017.

Congenital Heart Defect (CHD) Awareness Week is an annual awareness effort to help educate the public about congenital heart defects.  This year CHD Awareness Week will be celebrated Feb 12- 18, 2017. Join us as we celebrate our #HeartHeroes!  

In honor of this week I have compiled a list of great books for children and adults to help explain and understand congenital heart defects.

heart books

Here they are:

1) Riley’s Heart Machine

rileys heart book cover Riley worries about sharing her secret of having a heart defect and a pacemaker with her school friends. She tackles her fear of being different and reveals her secret to her friends in a unique way. Children will learn about accepting others differences and embracing the attributes that make them special. Suggested age range for readers: 3-8

 

2) Zipline

zipline

“Zip-Line” is a charming children’s book written for young boys and girls that had open heart surgery and are left with a “zip-line” – a large scar on their chest.

 

3) I Couldn’t Love You More

I Couldnt Love You More

When Matt and his wife, Sarah, were halfway through her pregnancy, they discovered their son would be born with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital defect. Matt and Sarah’s son, Bowen, was born on 9/9/10 and received a huge following through the Hammitt’s blog (bowensheart.com), K-LOVE, and ABC News. A portion of the proceeds from the book goes to the foundation the Hammitts’ have started to help parents with children who have this heart condition.

 

 

 

4) Born With A Broken Heart

Born With a Broken Heart

Alex’s heart book, Born With A Broken Heart, is an inspirational and educational children’s book. It is our hope that this book will give parents and children the opportunity to learn about congenital heart disease (CHD) and to spread CHD awareness throughout the world.

 

 

 

ADULT BOOKS

1) Heart Warriors –

heart warriors

Five months pregnant, Amanda Adams and her husband were given two abysmal choices regarding her pregnancy: force her baby to fight for his life through countless invasive and dangerous surgeries, or perform a late term abortion. Despite the fact that Liam was missing half his heart, Amanda chose life.

 

 

 

2) Sam’s Heart

sams heart

When Nicole was pregnant with Sam she was told that there was little hope for him to live. Now a healthy two-year-old Sam has had his fair share of operations and time in hospital, but now lives each day with fun and purpose. Journey with Nicole as she shares her family’s story of overcoming the world’s obstacles to trust and believe in God’s promise. With God on your side miracles happen. www.samsheart.com.au

 

 

 

3) Henry: A Hypoplastic, Congenitally Defective, Transplanted Tale

henry

I could have written a blog about my kid – the one born with a funky, hypoplastic heart. But Henry (the Blog) was more than just sharing Henry’s story. Sure, it chronicled our lives during Henry’s years in and out of hospitals, multiple surgeries and terminal maternal hysteria. Good times, indeed!

 

 

 

Then of course there is my book “Jacob’s Journal – My Journey Home

Jacob's Journal “Jacob’s Journal – My Journey Home” is written by a mother of a child diagnosed at birth with Down Syndrome. This story is unique in the way it was written, since the mother chose to write it as if her son was telling the story. It will take you on an incredible journey, as this first time Mom finds out when she was 4 months pregnant, that her child has a congenital heart defect called – Tetralogy of Fallot.

Travel with this family on their emotional roller-coaster ride from Jacob’s birth, through his first surgery, to the first couple of months when got home.

 

 

Is there a favorite book about CHD that you would like to share?  Leave it in the comments.

Meet My Heart Hero – #CHDAware

Meet My Heart Hero

Meet my heart hero – my son!

February is a very important month for our family, because we celebrate a very special hero.  During the week of Feb 7-14 we are celebrating my son’s courage and strength, as my son is a Heart Hero!

Jacob after heart surgery

During this coming week I will share with you different stats about congenital heart defects.  My son was diagnosed with Tetralogy of Fallot.

Listed below are examples of different types of CHDs from the www.cdc.gov website. The types marked with a star (*) are considered critical CHDs.

If you are looking for more information about congenital heart defects, check out this list from the CDC website of other organizations committed to understanding more about congenital heart defects.

You can find out more of my son’s journey in my book at “Jacob’s Journal – My Journey Home.”

Jacob's Journal

This book is a recount of what Jacob went through the first 6 months of his young life, and the unique thing is I wrote it as if Jacob was telling the story, because in fact it is his story. I also created a glossary of terms so if families hear those words, they have a better understanding of what they mean.

 

If your child is a “Heart Hero”, please comment below what their diagnosis is.

 

Do You Know “Heaven’s Very Special Child”?

As I was organizing my living room, from the holiday mess.  I came across this poem that was framed.

See this poem is very special to me, because it was given to me by an older nurse I met at our hospital on our first trip to the emergency room for Jacob.  She was blessed with “Heaven’s Special Child”, and she reassured me that everything will be okay and that my husband and I are truly blessed!

Heaven's Very Special Child

Here is how the poem reads: [Read more…]