Monday, February 6, 2012

National Heart Week

     Tomorrow begins the Annual Congenital Heart Defect Awareness Week, Feb. 7-14, 2012.  Some of you may know about my nephew, Rylan, and others may not.  Rylan is a super energetic three year old, who loves his brother and sister, enjoys preschool, and loves coming to my house.  OK, not really my  house but Lily's house!  Prior to Rylan's birth, my sister received her typical ultrasound.  Only she left with more questions.  Jamie, my sister, later received another ultrasound with a heart specialist.  The baby was diagnosed with Hypoplastic Left Heart Syndrome, HLHS.

     HLHS is a congenital heart defect where the left side of the heart is not properly formed.  It can vary from patient to patient as to the extent of the condition.  The doctor assured Jamie that she did nothing wrong and that the problem could most likely be corrected.  My nephew would need to receive at least three heart surgeries, with the first one being in his first few days of life.
     Jamie and Shawn, my brother-in-law, saw an excellent specialist in Chicago.  He filled them in on the procedures and reminded Jamie to enjoy her pregnancy.  Jamie and Shawn are wonderful.  They continued smiling each day and going about their life.  If they were hesitant and worried, it didn't show.  They gave the rest of the family the strength that was needed.  Rylan was definitely blessed with wonderful parents!
The Hanson Family, 2008

     Rylan was born without any problems, aside from the small heart!  A few days after his birth, he underwent surgery to begin the process of correcting his heart.  Rylan sailed through the surgery and once again was blessed!
Rylan after his first open heart surgery!  A true CUBS fan :)

     Many months later, Rylan had his second heart surgery.  He again went through the same hospital and heart team.  This time, we were more nervous.  We had had many months to love Rylan and he grew in our hearts.  So to be honest, all of us were scared.  But we have a strong family and provided each other the strength to get through.
Team Rylan for the March of Dimes'
Annual March for Babies.

     Shortly before Rylan's third birthday, he received his third heart surgery.  With each surgery, the fear and nervousness mounted!  Again, we were blessed with a great outcome of the surgery.
However, months later, Rylan began having some problems.  His heart became swollen and wasn't working as well as the doctors had hoped. 
     Jamie and Shawn sought out a second opinion and were faced with the truth.  Rylan was beginning the process of heart failure.  Now wait....heart failure is not final, it does not mean immediate.  It simply means that the heart is working harder than it should be and procedures need to be done in order to prevent complete heart failure. 
     The time has come to consider a heart transplant team and location.  Because of our location, Jamie and Shawn are near Madison and Milwaukee, WI; Chicago, IL; Mayo Clinic in MN.  Again we are blessed with the options of finding the best qualified doctors and staff!  Jamie and Shawn have selected a team, but that doesn't mean we have given up hope.  That simply means that if the time comes, our family is prepared and educated!  We still have hope that Rylan's heart will recover on it's own!  If you'd like to learn more about Rylan and his journey, please check out his Caring Bridge website at
The Hanson Family, 2011

     With all this being said, tomorrow starts the annual heart week.  I never thought that I would know or love someone with a congenital heart defect.  I didn't realize that it is common.  I didn't understand that it does not mean the end.  I now know that a congenital heart defect does not determine the person's future, they do.  They and their families and live a happy life, full of love, fun, and surprises.
     This is a little off the subject, but not completely!  I would like to challenge everyone to go to their local blood bank and donate.  Taking one hour out of your day, has the potential of saving three lives!  And while you're doing something good, why not sign up to be an organ donor!  Challenge yourself....what can you do, to better your community and the world?
Below you can learn more about Congenital Heart Disease.

"Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.

It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults."

Five Facts About Congenital Heart Defects

Did you know that congenital heart defects are common?Congenital heart defects are conditions present at birth that affect how a baby's heart is made and the way it works. They are the most common type of birth defects. In the United States, about 40,000 infants are born with a heart defect each year.
Did you know that some heart defects can be found before birth, some at birth, or some after a baby leaves the hospital?
Some congenital heart defects can be found before birth. Knowing if a baby has a heart defect before birth can help families plan for the future. Some heart defects can be found at birth, because they can cause a baby to have bluish tinted nails or lips or troubled breathing. Also, some heart defects potentially can be detected in babies soon after birth using pulse oximetry screening, which is a test to determine the amount of oxygen in the blood and pulse rate. Certain hospitals screen all babies soon after birth using pulse oximetry screening. However, pulse oximetry screening is not required in most states. Other heart defects might have no signs at birth and are not found until later in life, during childhood or even adulthood. If a health care provider (a doctor or nurse) thinks a congenital heart defect is present, the baby can have several tests to diagnose the defect.

Did you know that congenital heart defects can greatly affect the finances not only of the families involved, but of everyone?
In the United States, hospital costs for people with a heart defect were about $1.4 billion in one year. Families and the government share the burden of these costs, which means that all taxpayers are affected. Other costs due to lost wages or work limitations can affect families and businesses as well.

Did you know that people with congenital heart defects are living longer?
As medical care and treatments have advanced, infants with heart defects are living longer and healthier lives. Many now are living into adulthood. About one million adults in the United States are living with a congenital heart defect. It is important for children and adults living with a congenital heart defect to see a heart doctor regularly throughout their lives.

Did you know that some congenital heart defects can be prevented?
The cause of most congenital heart defects is unknown. Some babies have heart defects because of changes in their genes or chromosomes. They also might be caused by a mix of genes and other risk factors. The Centers for Disease Control and Prevention's National Birth Defects Prevention Study have found that women who are obese, have diabetes, or smoke during pregnancy increase their chances of having a baby born with a heart defect. A woman can take some important steps before and during pregnancy to help prevent congenital heart defects. She can work to get to and stay at a healthy weight, control diagnosed diabetes, quit smoking, and take folic acid daily. These actions can reduce the risk of having a baby with a congenital heart defect.

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