#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.

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


“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.





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


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.

Down Syndrome In The Workplace – Meet Our Twentieth Entrepreneur With Down Syndrome

Special & Deteremined WDSD - Karen Gaffney s



I am so happy to finish this campaign with our twentieth entrepreneur with Down Syndrome – Karen Gaffney!

Karen is a truly motivational speaker, self advocate, college graduate, President of the Karen Gaffney Foundation and an avid swimmer.

She successfully swam the English Channel as part of a six-person relay team. And two years ago, she accomplished her biggest swimming Challenge yet…she swam 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, rather than different, from everyone else.

Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations.

Her inspirational TED Talk she did July, 2015 entitled “All Lives Matter” was so amazing, let me share:


Her foundation the Karen Gaffney Foundation is “dedicated to championing the journey to full inclusion for people with Down syndrome and other disabilities”. Karen has videos and courses that she has developed.

Her lifestyle proves a full productive and inclusive life is in store for parents and families of a child born with Down syndrome or other learning disabilities.

Please visit her site and all that she is doing to pave the way the individuals with Down Syndrome.

Please continue following us as we celebrate 21 entrepreneurs who own their own business, have a meaningful job and the companies that are hiring individuals with Down syndrome, as we lead up to celebrate World Down Syndrome Day on March 21st.

Down Syndrome In The Workplace – Meet Our Eighteenth Entrepreneur With Down Syndrome

Special & Deteremined WDSD - Nolan Stilwell s So let’s meet our eighteenth entrepreneur with Down Syndrome and see what Nolan Stilwell is cooking in the kitchen.

Have you heard of Sweet Heat Jam Co? Sweet Heat Jam Co. was founded in 2011 by Nolan Stilwell. Nolan is the creator of Sweet Heat Jams. He is a culinary artist, young entrepreneur, avid gardener and native Texan, who just happens to have Down Syndrome.

These handcrafted all-natural jams are made with a special blend of fresh chili peppers, fruits and a twist of fine-tuned culinary expertise. Most of the fruits and peppers used are Texas grown and the few that aren’t, only wished they could be! Sweet Heat jams are gluten-free, fat-free and so versatile in their use, you will find that these jams will become one of the hardest working jars in your fridge!

Nolan feels his business is a ministry, to help other individuals with disabilities feel valued in the workforce.

Let’s see what his Mom has to say about the business:

Besides finding Nolan’s jams at many fine Texan establishments you can also purchase his jams online at his store.

Be sure to check out the wonderful recipes Nolan has online using his products.

Please continue following us as we celebrate 21 entrepreneurs who own their own business, have a meaningful job and the companies that are hiring individuals with Down syndrome, as we lead up to celebrate World Down Syndrome Day on March 21st.