#CHDAware: Half Of All Infants Born With Down Syndrome Have A Congenital Heart Defect

Nearly 40000 infants in the US are born with CHD

Did you know that approximately half of all infants born with Down syndrome have a heart defect.

– See more at: http://www.ndss.org/Resources/Health-Care/Associated-Conditions/The-Heart–Down-Syndrome/#sthash.ZluZsAih.dpuf

Many congenital heart defects have no signs or symptoms.  Sometimes a doctor can hear a slight murmur in an infant, sometimes they can’t.  But that doesn’t always mean it a heart defect, and usually murmurs go away as the child grows up.

But for some of the severe case of congenital heart defects, they will show signs or symptoms.  Here are some things to watch out for:

  • Rapid breathing
  • Cyanosis (bluish coloring of the tongue, lips, skin and/or fingernail beds)
  • Fatigue (note that most babies sleep a lot, but more than “normal” fatigue or tiredness may indicate a heart defect or other medical issue)
  • Poor feeding
  • Poor weight gain

If you have concerns about any of the above or you child’s health you may want to consult with a pediatric cardiologist.

As you bring your child with CHD home, it’s a good idea to have a consult with a nutritionist from the hospital.  Feeding a baby with CHD is a whole different ball game.  They have a hard time gaining weight, their heart is working harder.

Some of the reasons that infants with congenital heart disease grow slowly include:

  • A fast heart beat
  • Breathing harder and faster
  • A poor appetite
  • The need for extra calories by the heart and lungs
  • Poor digestion of food
  • Tiring easily/ falls asleep with feeding
  • Frequent colds

Because Jacob had Tetralogy of Fallot and because he had Down syndrome made it even more difficult for him to gain weight. We had several tests done, because we weren’t sure if he had issues with acid reflux or other issues, as his oxygen levels would always dip after he ate.

One of the test performed was a “Swallow Test”. Which determined that when Jacob drank his formula, sometimes he was silently aspirating it and sometimes the formula was sitting in the back of his throat. The Speech Pathologist decided to thicken the formula so it would be easier to go down.

We also went through different nipples, as we determined the slower nipples were causing Jacob to work harder to get the formula. We also had to place our finger under Jacob’s chin to give him some support as he drank, because this also caused him to exhaust quicker.

Here is a quick snapshot of the Feeding Tips that the Speech Pathologist gave us.

feeding tips

There are also other things to consider when it comes to tube feeding or introducing solid foods.  That should be discussed.

Do you have a Heart Hero that you would like to share with us?

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.

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.



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…]