#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

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.

Down Syndrome In The Workplace – Companies That Employ Individuals With Down Syndrome

down syndrome in the workplace slider

As I wrap up this campaign, I was so impressed by all the amazing entrepreneurs or individuals with Down Syndrome that own a business or are working at a meaningful job that I shared with you.

down syndrome entrepreneur (1)

I am also very impressed by all the companies/nonprofits that are helping adults with Down syndrome find jobs, employing them or teaching them, that I wanted to share a few that I came across:

Aspire Coffee – At Aspire CoffeeWorks, adults with and without disabilities work side by side to bring you freshly roasted coffee. It’s a productive and successful environment and a great example of how people of all abilities can work and succeed together.

When people promote and demonstrate a way of living that embraces and celebrates the inclusion of those with disabilities, everyone is better and stronger for it. At Aspire, and at its social enterprise Aspire CoffeeWorks, this is not a goal or a dream but a belief lived out every day.

Aspire is one of the most innovative human service non-profits in the Midwest with an incredibly talented and dedicated team of more than 250. Plus, Aspire is backed by 200 community partners, thousands of donors, volunteers and family, and friends who work together to redefine what’s possible for people with disabilities. Annually, Aspire serves over 900 participants, who have autism, cerebral palsy, Down syndrome and other disabilities.

Creekside Cookies and More, Inc. – Creekside Cookies and More is a not for profit organization begun by parents of young adults with Down Syndrome. It was uniquely created out of a need to provide opportunities for adults with disabilities in the community. Through our “old fashioned“ mixes, we wish to share with others the creativity and abilities of these young people while providing a vocational resource that helps to build skills and create hope for those with developmental disabilities.

Inspires2Aspire – Inspires 2 Aspire became a reality in 2009 with the assistance of the Summit DD Community Employment Services Micro-Enterprise Grant Program and my family support group. We share a portion of our profits with organizations who support individuals with developmental disabilities.

Simply Adorable Blankets – is a non-profit 5013C organization. Their organization was created to provide more opportunities for young adults with disabilities in Southeastern Virginia. They promote awareness, provide resources and offer training to people with developmental disabilities.
All of this helps them to become independent, productive members of the community.

Waggies by Maggie & Friends – Waggies by Maggie & Friends is a non-profit dog treat company whose mission is to employ persons with intellectual disabilities. Their all-natural, vet-approved treats are made with the finest ingredients and contain no preservatives. A purchase of Waggies rewards your dog while supporting employment for members of the community who want to be part of the workforce. It’s a winning combination!

Beau’s Coffee – is a 5013C nonprofit, a special coffee shop run by very special people in Wilmington, NC

This campaign came to me as I met a lovely young woman who was at a local conference. She had a table there as she was representing her business Pampered Chef, and it came to me.

As parents and individuals with Down syndrome are reaching the end of their high school years and are considering what to do next, whether it be secondary education, going into the job field, volunteering or running a business. There are plenty of at work from home online sales businesses that they can get into, for example:

Pampered Chef

Scentsy Candles

Mary Kay

Young Living Essential Oils

Stella & Dot

to name a few. You just need to work with your child to determine what it is that they want to do and build a team to get them there.  Transition planning usually starts around 14 years old. Their IEP team will start talking to you about transition planning, and that is the time you will sit down with your child to find out their career aspirations. What do they like to do, do they want to go on to college?

PIN LATER:

Transition planning

Unemployment rate for individuals with Down syndrome is high, but it doesn’t mean they can’t work. It doesn’t mean they can’t run a business. You just need to give them the right tools to be successful!

PIN LATER:

21 amazing down syndrome entrepreneurs

 

1st Entrepreneur – Andrew Banar from Group Hug Apparel

 

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

Special & Deteremined WDSD - Troy Drake s

 

Meet our nineteenth entrepreneur with Down Syndrome – Troy Drake.

Troy is an incredibly talented entrepreneur from Nevada. After his family realized how difficult it was going to be for Troy to find a meaningful job, since unemployment rate for individuals with Down Syndrome is so high, they took a leap of faith and opened up a company that makes wooden inspirational signs, personalized items and other home décor.

Hence the birth of Doodle Duck Design 47. An online Etsy shop of products created by Troy himself.

You need to check out Troy’s shop, he has such wonderful signs. Here are a few examples of some I like:

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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.