So here we go! We're asking all the little ones to help us spread the word of CHD AWARENESS.
Send in your Valentine themed CHD Awareness drawings, poems, letters to a sibling, whatever your creative side may fancy. We are going to print a few of these as Valentine cards to pass out at school. Best yet, you get yours at cost if you send in a drawing!! We are looking for CHD kids and their siblings to help us tell the world that CHD's affect too many people.
Go ahead and send in awareness messages and drawings that aren't themed for Valentine's Day too ... we're looking at also making a calendar!
The final cost for these I'm not sure yet, but working with a company to get the best deal. All proceeds will go the The Children's Heart Foundation.
As that clock is NOT on our side, we're asking that you send this in by January 6th.
Email - littleheartthatcould@hotmail.com
12.29.2009
10.26.2009
Organ Donor
Organ donation is the process of giving part or all of an organ for the purpose of transplantation.
Recipient is a person who receives a transplant.Give the most precious gift – LIFE!!
Another name is added to the wait list every 11 minuets.
Nearly 3 months… the average wait time.
Donate organs, eye and tissue to save a life!
Organs needed for more than 100,000 men, women and children.
Need for multicultural donors is the greatest.
Only 30% of Americans know the essential steps in becoming a donor.
Remember to sign an organ donor card and Tell your family!!
10.05.2009
Balloon Launch - October 3, 2009
Balloon Launch - October 3rd, 2009
A strong wind helped to spread our message. Balloons all over the country went flying on Saturday in an effort to make more people aware of Congenital Heart Defects.
CHD is the #1 birth defect
1 in 100 babies born this year will have CHD
There are more than 40 different types of CHDs.
Little is known about the cause of most of them.
There is no known prevention or cure for any of them.
The poem I read was by Nicole Roberts, her son also passed away from CHD. Thank You Nicole for sharing this with me. It was perfect.
THE CHD ZONE by Nicole Roberts
Sometimes I want to stand up and yell;
“Listen to me I have something to tell,
About a disease that takes young inspiring lives,
And only 80%, it inflicts, survives.
This is not a good statistic, you see,
Because one that didn’t survive was part of me.
He was my son and my beacon of light.
He was pure beauty and his Dad’s delight.
He was our Nicholas, our heart, our joy.
He was our beautiful, beautiful boy.
He was one of 8,000 to die this year.
He was one of 8,000 to go to God’s care.
That is too many to go before they turn one.
That is too many parents who will mourn a son,
Or a daughter, if the case may be.
There are too many parents just like me!
We don’t want any more to join our grief.
We want those fighting to get some relief.
We need to make a dedicated stand.
We need to lend a helping hand.
Nicholas sleeps now in eternal rest,
But CHD awareness still needs our best.
It needs us to continue on our mission,
To make aware those that will listen.”
Before Nicholas, I did not know of CHD.
I did not know the effect it would have on me.
I knew not of the inner walls of the CICU.
And of the strength I would get from all of you.
I did not know that our “home” would be,
The only place we could gather our family.
It would be inside the hospital walls.
It would be amidst code blue calls.
Life would take us on a fearful ride,
But one we insisted on taking in stride.
It would allow us to meet parents who show,
Wherever your child leads, you must go.
An unselfish group in a club all our own,
We had entered the CHD zone,
A place where miracles are constantly achieved,
And the loss of one is so sincerely grieved.
Life brought us to a world we could never have dreamt,
And a beautiful baby showed us what it all meant.
He was the center of this incredible space,
The reason for our time in this place.
Our son Nicholas made it all worthwhile.
He made us believe with his powerful smile,
There was nothing in this world we can’t do.
He truly did pull us all through.
He showed us that each second of life is meant to be lived.
And happiness is such a precious gift to give.
He gave of himself in an unselfish way.
And we thank God, as we pray;
“We thank You for the wonderful time with our son.
We thank You for the blessings and all You has done.
We thank You for choosing Mike and I.
What were Your reasons? We don’t know why.”
We are humbled by being God’s choice.
We are humbled by being Nicholas’ voice.
We believe there was a reason for it all,
We believe CHD is our call.
You all know by now what is a CHD,
But have you told another family?
Knowledge is meant to be shared.
Special hearts are meant to be repaired.
Have you told someone you know,
So that CHD awareness may grow?
Share your knowledge base,
So CHD ignorance, we can erase.
Have you mentioned that 40,000 babies a year,
Have precious hearts that will receive special care?
Have you mentioned their hearts will not develop the normal way,
And their life may not be okay?
8,000 of these babies will not survive.
32,000 will celebrate their lives.
There is so much more we can do,
We can help more to pull through.
We can make many more people aware,
We can show others we care.
Let’s make Nicholas’ legacy show,
By making CHD awareness grow.
If we all do our own parts,
We can save more special hearts.
We can give a family a chance,
To watch their child play and dance.
Nicholas has showed us we can all have an impact.
Nicholas has made us aware of that fact.
We can not look the other way,
This will not make the fatalities go away!
It is ok to stand up and yell
“Listen to me, I something to tell:
It is of my son, of his life, of our joy.
It is of the loss of our baby boy.
His name was Nicholas and his eyes were blue,
His smile was infectious and his soul was true.
But his heart was special and was too hard to repair,
And so he is now in God’s wonderful care.”
But Nicholas did not need to go in vain
And helping others can ease the pain
Of my empty heart from this incredible loss
So won’t you help me get the point across?
Won’t you stand up and yell with me?
So that the world is aware of CHD?
Before Nicholas, I did not know of CHD
Now, its future is part of me.
Remember to email me your pics at littleheartthatcould@hotmail.com !!
9.23.2009
CHD AWARENESS BALLOON LAUNCH
It's time to spread the word.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.
Congenital Heart DefectsTell someone you love about Congenital Heart Defects!
~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation
Thank you so much for your help in spreading awareness.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.
Congenital Heart DefectsTell someone you love about Congenital Heart Defects!
~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation
Thank you so much for your help in spreading awareness.
Introduction and Inspiration
Our son was born full term by an emergency c-section after his heartrate dropped during labor. Johnny was quickly brought out in under a min.He was diagnosed at 20 weeks of pregnancy with Heterotaxy, asplenia and several heart defects. He is a beautiful baby who loves to suck on a binky when he's allowed!
He was extubated for the first time at 7 days for about 12 hours. This attempt failed due to low cardiac output syndrome and multisystem organ dysfunction.
Johnny had his first surgery at age 3weeks and 2 days. He had a pulmonary band put on to restrict blood flow to his lungs and help circulation throughout his body. He also had his newborn ductus closed. That was June 12th, the next day he had his second surgery. Johnny needed the band to be a little tighter. He also had a second chest tube and a belly tube put in to reduce the pressure from the excess fluid.
On July 13th, after a month of not enough progress and still intubated living in the hospital, Johnny had his 1st Open Heart surgery. Dr. del Nido repaired the leaky valve, made it into two valves and removed and abnormal growth in his right ventricle. His right ventricle had an immediate response in size... nothing short of a miracle.
On August 5th, Johnny's condition plumeted. He went into heart failure, kidney failure and liver failure. A heart cath was done to determine the cause for this drastic change as well as a liver biopsy. The results of these tests showed Johnny was in end stage liver disease. He was suffering from seizures, had damage to his lungs due to being on the vent for so long, his kidneys were very sick and near failure, his heart was in a good place but the rest of his body had gotten to sick to recover. We said goodbye with our family to our little boy and on August 12, 2009, Johnny Austin King passed away.
He had become an incredible inspiration to so many. His soul and spirit was strong and remains with us. It is for Johnny but also with Johnny that I am moving forward with the battle of CHD's. Spreading the word and raising money. So many suffer from Congenital Heart Defects everyday.... 40,000 newborns each year will be diagnosed with a CHD. It is the number 1 birth defect. Help me spread awareness through this website and through events and activites. If you are doing something for CHD Awareness, post it here. Together we can take a Broken Heart and become a Healed Community.
He was extubated for the first time at 7 days for about 12 hours. This attempt failed due to low cardiac output syndrome and multisystem organ dysfunction.
Johnny had his first surgery at age 3weeks and 2 days. He had a pulmonary band put on to restrict blood flow to his lungs and help circulation throughout his body. He also had his newborn ductus closed. That was June 12th, the next day he had his second surgery. Johnny needed the band to be a little tighter. He also had a second chest tube and a belly tube put in to reduce the pressure from the excess fluid.
On July 13th, after a month of not enough progress and still intubated living in the hospital, Johnny had his 1st Open Heart surgery. Dr. del Nido repaired the leaky valve, made it into two valves and removed and abnormal growth in his right ventricle. His right ventricle had an immediate response in size... nothing short of a miracle.
On August 5th, Johnny's condition plumeted. He went into heart failure, kidney failure and liver failure. A heart cath was done to determine the cause for this drastic change as well as a liver biopsy. The results of these tests showed Johnny was in end stage liver disease. He was suffering from seizures, had damage to his lungs due to being on the vent for so long, his kidneys were very sick and near failure, his heart was in a good place but the rest of his body had gotten to sick to recover. We said goodbye with our family to our little boy and on August 12, 2009, Johnny Austin King passed away.
He had become an incredible inspiration to so many. His soul and spirit was strong and remains with us. It is for Johnny but also with Johnny that I am moving forward with the battle of CHD's. Spreading the word and raising money. So many suffer from Congenital Heart Defects everyday.... 40,000 newborns each year will be diagnosed with a CHD. It is the number 1 birth defect. Help me spread awareness through this website and through events and activites. If you are doing something for CHD Awareness, post it here. Together we can take a Broken Heart and become a Healed Community.
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