Incredible Story

http://www.express.co.uk/posts/view/159555/Baby-saved-by-a-remote-control

I saw this story on the 1in100 Facebook page, and what a story it is!! This is the exact surgery that Rebekah had, only she was not given the option of the remote control band. I can see where this would be a huge benefit! If we had this type of band, theoretically the surgeons could enlarge the band right now and postpone Rebekah's surgery a bit longer to give her collateral arteries a bit more time to grow. If you have a chance, read the story and also check out the 1in100 website. It is specifically dedicated to spreading awareness of CHD (congenital heart defects). The two primary goals of 1in100 right now are 1) advocating for pulse oximetry for each newborn, which can detect some types of CHD's, and 2) pushing for the manufacturing of pediatric heart devices, including valves and parts used to create arteries such as the one Rebekah will be getting. This is a great organization to support for their work!!

Nancy

CHD

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held her, I'd waited so long,
It's knowing that I need to help her grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking her sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do her nails look blue?
It's cringing inside at what she's been through.
It's dozens of call to her pediatrician
He knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching her sleeping; her breathing is steady.
It's surgery day and I'll never be ready.
It's handing her over, I'm still not prepared,
It's knowing that her heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that she'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching her chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.

This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)

CHD Awareness

In honor of CHD (congenital heart defect) Awareness week, I wanted to post some facts that I found:

• According to the March of Dimes, congenital heart defects are the #1 birth defect. It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. To put CHD in better statistics: about 10,830 babies are born each day and out of those babies about 411 are born with some sort of birth defect. Out of those 411, about 87 are born with CHD.

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

• More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists.

In our family, CHD has affected 2 of our 5 children. Obviously, Rebekah has a complex CHD called Truncus Arteriosus, but her brother, Aaron, was also born with two mild heart murmurs that resolved themselves by his fourth birthday. CHD is much more common than you may think!
We are very thankful for all of the research that has been done for children like Rebekah with CHD. Thirty years ago, Rebekah would have been sent home with us after birth, and we would have been told to enjoy her for the few months that we were able to. She would have had a less than 10% chance of seeing her first birthday, let alone the rest of her life. The surgeons and doctors nationwide who give of their time and talents to help children with CHD have our utmost respect and appreciation. Thank you for all that you do!!