CHD Awareness Week 2017

There is an incredible amount of awareness and education surrounding adult heart disease, but very little about the number one birth defect or leading cause for birth-defect related deaths.

Did you know:

• Congenital Heart Defects (CHDs) affects approximately 1.8 million families in the United States
• CHDs are the most common birth defect and the leading cause of birth-defect related deaths worldwide
• Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding
• There are currently 35 distinct CHDs recognized
• There is no known cause for CHDs and there is no cure. Only treatment, such as medicines, numerous surgeries and heart transplants.
• Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect
• 1 in 10 of those are born with a fatal defect

My daughter, Allison Grace, was one of these statistics. Allison was born on April 29, 2002, with several complex heart defects. Prior to her diagnosis in utero, I could not even tell you what CHD stood for. Allison spent 32 days in the NICU before we were able to bring her home to meet her brother and sister. Our next few months were filled with doctor visits, echocardiograms, medicines, and a heart cauterization. 

On August 9, 2002, Matt and I kissed Allison and handed her over to the nurse for what was to be her first of several open heart surgeries. This was the last time we held our daughter alive. On August 13, at only 101 days old, Allison earned her angel wings.

We never got to see our daughter take her first steps or say her first words. We never had her wrap her arms around us and say "I love you mommy and daddy." There is no "first day of school" photo. She will never graduate high school or go to college. Matt will never walk her down the aisle and give her to the man who has promised to love her forever. We were blessed to have had 101 days with our daughter. Many CHD parents are not as fortunate as us. 

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on so many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients. 

Here are a few ways you can help bring awareness to CHDs this week.

• If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
• If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness and research.
• Wear red on February 14 to remember those who are affected by CHDs.
• And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.

Help Spread Awareness -- CHD Awareness week 2011

There is an incredible amount of awareness and education surrounding adult heart disease, but very little about the number one birth defect or leading cause for birth-defect related deaths.

Did you know:

• Congenital Heart Defects (CHDs) affects approximately 1.8 million families in the United States
• CHDs are the most common birth defect and the leading cause of birth-defect related deaths worldwide
• Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding
• There are currently 35 distinct CHDs recognized
• There is no known cause for CHDs and there is no cure. Only treatment, such as medicines, numerous surgeries and heart transplants.
• Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect
• 1 in 10 of those are born with a fatal defect

My daughter, Allison Grace, was one of these statistics. Allison was born on April 29, 2002, with several complex heart defects. Prior to her diagnosis in utero, I could not even tell you what CHD stood for. Allison spent 32 days in the NICU before we were able to bring her home to meet her brother and sister. Our next few months were filled with doctor visits, echocardiograms, medicines, and a heart cauterization.

On August 9, 2002, Matt and I kissed Allison and handed her over to the nurse for what was to be her first of several open heart surgeries. This was the last time we held our daughter alive. On August 13, at only 101 days old, Allison earned her angel wings.

We never got to see our daughter take her first steps or say her first words. We never had her wrap her arms around us and say "I love you mommy and daddy." There is no "first day of school" photo. She will never graduate high school or go to college. Matt will never walk her down the aisle and give her to the man who has promised to love her forever. We were blessed to have had 101 days with our daughter. Many CHD parents are not as fortunate as us.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on so many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.

Here are a few ways you can help bring awareness to CHDs this February.

• As my long-time readers know, I blog every year about this important issue. If you blog, please make an entry this month helping raise awareness. You can even link to this entry.
• Place a button on your blog for the month.
• If you are on Facebook, become a fan of CHD Awareness Week 2011.
• If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
• If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness and research.
• Wear red on February 14 to remember those who are affected by CHDs.
• And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.

This post has been made in loving memory of Allison Grace Jacobs.

February is "Heart Month"

Did you know:

• Congenital Heart Defects (CHDs) affects approximately 1.8 million families in the United States
• CHDs are the most common birth defect and the leading cause of birth-defect related deaths worldwide
• Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding
• There are currently 35 distinct CHDs recognized
• There is no known cause for CHDs and there is no cure, only treatment, such as medicines, numerous surgeries and heart transplants.
• Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect
• 1 in 10 of those are born with a fatal defect

What if that "1" was yours?

January, 2002 a man and a woman went to a routine 18-week ultrasound while pregnant with their third child. They came home to a message on their answering machine. "Something was seen on the ultrasound." The next eight months were an emotional and heartbreaking roller coaster. Their daughter was born on April 29, four weeks early, with several complex heart defects. After spending 32 days in the NICU she finally came home. The parents were told their precious baby would require heart surgery in the near future. The next two months were filled with doctor visits, echocardiograms, medicines, a fun family vacation and a move three hours "down south".

At 3 am on August 9, 2002, this man and woman loaded their 3-month old daughter into the car and drove 3.5 hours north for her open heart surgery. The next five days were a living nightmare for them. And on August 13, at only 101 days old, their daughter earned angel wings.

That "1" was our daughter, Allison Grace.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on so many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.

Here are a few ways you can help bring awareness to CHDs this February.

• As my long-time readers know, I blog every year about this important issue. If you blog, please make an entry this month helping raise awareness. You can even link to this entry.
  
• Place a button on your blog for the month.
• If you are on Facebook, become a fan of CHD Awareness Week 2010.
• If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
  
• If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness and research.
  
• Wear red on February 14, not to represent cupid, but to remember those who are affected by CHDs.
  
• And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.

This post has been made in loving memory of Allison Grace Jacobs.

Help Bring Awareness To CHDs

CHD stands for Congenital Heart Defect and is an anomaly of the heart that is present at birth and causes one or more portions of the heart to develop abnormally. Heart defects originate in the early part of pregnancy when the heart is forming and can affect any of the different parts or functions of the heart.

There are currently 35 distinct CHDs recognized and 1 in 85 babies in the United States alone are affected by any one of them. A few defects include half of the heart to be severely undeveloped, a hole in the heart, missing arteries going to the heart ,or arteries going to the heart to not be connected. And these are just a few defects. There are still many more unmentioned. Some children may have one CHD, while others have several.

We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watched our little girl fight through open heart surgery at 3 months old, all to lose her life at only 101 days old. No parent should ever have to bury a child.

CHDs are the number 1 birth defect worldwide and the leading cause of birth-defect related deaths. There is no known cause for CHDs and there is no cure, only treatment, such as medicines, numerous surgeries and heart transplants.

Yet despite these facts, CHD's are the LEAST publicized and many newborns are still not being screened for CHD's. Very little people have heard of CHD's and even those that have, many times know very little about them. This is a serious issue that needs to be taken seriously.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.

Help me honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost. Please sign this petition to help try to bring awareness to CHDs.

Thank you.

This post is in honor of our daughter Allison Grace Jacobs.
"Some people only dream of angels. We help one in our arms".

Help Spread Awareness

**This post is stickied. Please scroll down for new entries**

Most people know that February is American Heart Month. But did you know that within February is also CHD Awareness Week?

Each year, an estimated 1 in 100 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.

When you see those two little lines on the home pregnancy test you are thinking about morning sickness, labor, diapers, breastfeed or formula, will I make a good parent? No one ever imagines that their thoughts would be consumed to echocardiograms, cardiology visits, medicine schedules, surgery, and the endless thought "will my child die".

We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watching our little girl fight through open heart surgery at 3 months old. We have lived through the horrible nightmare of burying a child, had our living children lose their innocence and endure the harsh realities of life at 3 and 6 years of age and somehow have managed to remain a family through it all.

We are just one story in thousands that need to be told. There are others, like us, who have lost children to CHDs. Some have children that have simple defects that may or may not need surgery, while others have children with complex defects that will need to endure several surgeries and years of medicines and doctor visits.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.

Help me honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost.

So what can you do to help?

• If you blog, please make an entry helping to raise awareness. You can even link to this entry.
  
• Place a button on your blog for the month.
  
• If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
  
• If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness.
  
• Wear read on February 14 to remember those who are affected by CHDs.
  
• And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.

We love and miss you Allison.

Update

Dale was life flighted to the Cleveland Clinic last night and they were able to stabilize him overnight. He was diagnosed with an Aortic Aneurysm and he made it through surgery. That is all I know at this time. Thank you so much for all your thoughts and prayers.

For The Heart Of A Child

Your help is needed
And that’s not all,
we need awareness,
for the little and small.

We need your help,
to spread the word ...
of congenital heart defects,
for little have heard!

This is a deadly defect,
affecting many that are born,
turning lives upside down ..
leaving dreams shattered and torn.

Congenital heart defects,
known as CHD's,
are the #1 birth defect,
but a hidden disease.

Doses of medicine,
many times each day,
a little child,
that can't run or play,
his little heart,
can't take the stress,
his little body
just needs to rest.

A little baby
that struggles to eat,
with tiny blue lips,
and hands, and feet.

A mother stands by
her baby's grave,
praying through research,
others will be saved!

Written by Angela Brooks
June 2002

This February, American Heart Month, please help to honor and
remember all those lost to a congenital heart defect by forwarding
this message on to everyone in your address book. Nothing great will
happen if you forward this to 10 people, and you will not have bad
luck forever if you decide to delete it. However, by forwarding this
on to everyone you know, you will bring a smile to the faces of the
estimated 4,000 babies in heaven that die EACH YEAR from a congenital
heart defect and their families who miss them and love them dearly.
Please visit www.kidswithheart.org to see what else you can do to
help those born with the most common birth defect and #1 cause of
birth defect related deaths.

Below are just a few names of those lost to a heart
defect. In this message, they are simply names in a message that
carry with them a sad story. However, to the families that lost
them ... each of these names represent a child lost, a mother's
empty arms, and a father's grieving heart for the child that was ...

40,000 babies are born each year with a heart defect, 1 in 10 of those are born with a fatal defect, what if that "1" was yours?

Allison Grace Jacobs 4/29/02 - 8/13/02
Zachary Wayne Brooks 6/2/99 ~ 11/30/99
Ella Josette Mangold 05/05/05 - 05/08/05
Zev Samuel Pazo 1/25/06 - 5/18/06
Ethan Rey Martin 4/13/06 ~ 5/5/06
Severin Grant Brenny 9/23/02 - 7/17/04
Julian Christopher David Nov. 29, 2001 - May 20, 2006
Zachary George Metivier 5/27/05 - 10/17/06
Colin Samuel Brown 3/26/01 - 3/30/06
Corbin Marc Grabb 7-20-2004 - 6-29-2006
Mari Kathryn Moreland( Kaytee) 8-22-94 - 8-27-94
Joseph Scott Moreland 3-23-95 - 3-23-95
Charles Christopher Smith 11/30/06 - 12/04/06
Zoë Richardson 7-20-1999 - 9-5-2004
Alexander Joseph Kaplan 9/9/04 - 1/12/05
Mercedes Margaret Kincaid 08/02/2006-08/14/06
Jacob Abregana-Reyes 12.19.05-6.3.06
Chase Conway Jaeger 6/2/05-11/30/06
Emily Grace Taylor 6/4/01 ~ 7/24/01
Ashley Makayla Knight 12/9/04-6/22/06
Karen L. McNulty 9/25/73 ~ 8/31/05
Jake Richard Witt 10/15/02 ~ 3/30/03
Darius John Ellis 4/7/2005 ~ 9/3/2005
Samuel Jason Bocanegra 7/9/04 ~ 11/6/04
Jason Schweinberg 6/27/84 ~ 8/9/01
Cooper Walker Burchett 10/27/2006 - 10/29/2006
Justin Lee Shelnutt 2/25/01 - 5/16/01
David Binko Forever in my heart 9-27-2002 to 7-11-2006
Jessica Freed 5/25/81- 11/02/04
Timothy William Cole 10-11-94 to 6-15-95
Anthony Patrick Crawford4/24/2001~4/25/2001
Zoë Richardson 7-20-1999 to 9-5-2004
Colin Samuel Brown
Wyatt Johnathan Darrin Prince 11-13-97 04-11-98
Alexander Mercado 12/15/02 - 01/06/03
Audrey RosaLee Haugen 06/06/05 - 08/25/05
Lydia Ann Lawrence 10/5/05 ~ 10/5/05
Jessica K Freed 05/25/81 - 11/02/2004
Dominic John Berkowitz 11/05/06 ~ 11/14/06

In memory of all these precious children plus thousands of others and with hope for the 40,000 babies born each year with a heart before, please forward this on to everyone in your address book. We need to raise awareness of this deadly defect so babies will stop dieing from a broken heart!

Show A Little Heart - Help Spread Awareness

Most people know that February is American Heart Month. But did you know that within February is also CHD Awareness Day?

It amazes me how often it is told about the statistics of heart disease and problems in adults. How awareness and research is raised for adults, while the children continue to be pushed into the background.

I have sent a letter to Oprah for the past 3 years asking for help to bring awareness to CHD. Never have I even gotten a response. I like to think that some desk monkey scanning the email is the one who never passes the idea or my letter to Oprah.

Each year, an estimated 1 in 100 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.

When you see those two little lines on the home pregnancy test you are thinking about morning sickness, labor, diapers, breastfeed or formula, will I make a good parent? No one ever imagines that their thoughts would be consumed to echocardiograms, cardiology visits, medicine schedules, surgery, and the endless thought will my child die.

We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watching our little girl fight through open heart surgery at 3 months old. We have lived through the horrible nightmare of burying a child, had our living children lose their innocence and endure the harsh realities of life at 3 and 6 years of age and somehow have managed to remain a family through it all.

We are just one story in thousands that need to be told. There are others, like us, who have lost children to CHDs. Some have children that have simple defects that may or may not need surgery, while others have children with complex defects that will need to endure several surgeries and years of medicines and doctor visits.

February 14 is "Congenital Heart Defect Awareness Day." Raising national awareness about Congenital Heart Defects is important on many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients. Covering this important day on your show would achieve all this, and more.

I am asking the Oprah show to honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost. I would love to share my story and the memories of my little girl with your viewers in hopes to raise CHD awareness. Please feel free to contact me via email, XXX , or via telephone, XXX, to discuss this further. Thank you for your time and consideration.

So my call to action is this. Think about helping to bring awareness to CHDs this February.

• If you blog, please make an entry helping to raise awareness. You can even link to this entry.
  
• Place a button on your blog for the month.
  
• If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
  
• If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness.
  
• Wear read on February 14, not to represent the chocolate and roses, but to remember those who are affected by CHDs.
  
• And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.

This post has been made in loving memory of Allison Grace Jacobs.