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.

 

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.

My son is a thriving 9 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.

Congenital Heart Disease Is The #1 Birth Defect – #CHDAware

CHD is the #1 birth defect

Did you know congenital heart defects are the #1 birth defect.  It is the #1 birth defect with more occurrences than Spina Bifida, Down syndrome or hearing loss yet many are not aware of this condition.

Most-Common-Birth-Defect

 

However, early screening is key to an infant’s survival. We were fortunate because we detected Jacob’s heart condition when I was four months pregnant.

According to Dr. Matthew Davis, Chief Medical Executive with the Michigan Dept of Community Health “Across the country, an estimated 300 babies are sent home from hospitals each year with undetected congenital heart problems.”

So what is being done? Beginning April 1, 2014, Michigan will join 31 other states that have added pulse oximetry screening to their newborn screening tests to detect critical congenital heart disease (CCHD) in newborns.  For more information click here.

Read more about our journey when my son first got diagnosed with CHD.

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.

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.

 

5 Important Tips If Your Special Needs Child Visits the Emergency Room

5 tips for emergency room visit with special needs child

I had the wonderful privilege of interviewing Dr. Darria Long Gillespie, MD, MBA, FACEP, at the Type A Parent conference in Atlanta a few weeks ago. She is an ER doctor, Mom, TV and media health expert and radio host. She is a board certified emergency physician, and works in the emergency department at Northside Hospital, Atlanta. She has been on the Dr. Oz show, CNN, CNBC, The Fox News Channel and more. [Read more…]