February 14, 2013 - Happy Valentine's Day (Final Day of CHD Awareness Week)

Today is not only Valentine's Day, but also the final day of Congenital Heart Defect Awareness Week. The week has been emotional: starting on the 4 month anniversary of Kyle's death...peaking on the day he would have been 5 months old...and now ending on "the day" of celebrating love.  

I know he was so young, but when I think about him now I often pray that in those days when he was very, very sick he had some way of knowing or feeling that he was not alone...that so many people near and far around the world were praying for him...loving him...trying to give strength to his fight. 

While I give thanks for the healthy lives of my own children today, I can't stop thinking of this poem from Kyle's funeral program.  And I hope he knows that especially in the moment when he passed away, he was not alone then either.

In tears we saw you sinking,

And watched you pass away.

Our hearts were almost broken,

We wanted you to stay.

But when we saw you sleeping,

So peaceful, free from pain,

How could we wish you back with us,

To suffer that again.

It broke our hearts to lose you,

But you did not go alone,

For part of us went with you,

The day God took you home.

To conclude my CHD series with some hope, please read this story and watch this clip of a young hero: Hunter Paulin, who lives with CHD and ran in the football for the Superbowl this year.  With more widespread screening, awareness and research, I pray that more babies born with CHD have the opportunities that Hunter has had to live an active, healthy, and happy life.

In loving memory of sweet Kyle Michael

September 10, 2012 - October 7, 2012

LMW

February 13, 2013 - Congenital Heart Defect Awareness: How You Can Help

If CHD is a cause that you care about, here are some ways in which you can support necessary research and/or people whose lives are affected by CHD.

• The Children's Heart Foundation (CHF) is the United States' leading organization solely committed to funding life-saving research on CHD.  If you make a donation to CHF, over 75% of your donation directly funds research or research-education.  From 1996 to 2012, CHF has funded over $5.3 million to 52 research projects. 
• You can also become a corporate partner of CHF or volunteer at a local chapter of CHF to help support local fundraising, awareness and advocacy activities.  
• Write, call and visit your state legislators to ensure funding for the Congenital Heart Futures Act.
• Share knowledge you have about CHD with your friends and family, including putting facts and resources on your social media for others to be exposed to.
• Cardiac Kids is a Canadian volunteer organization raising funds to support children with CHD and their families.
• Camp Taylor and Hope with Heart are American camps and Camp Oki is a Canadian camp for kids with heart defects. All camps could benefit from donations or volunteers.
• Mended Little Hearts  and Little Hearts are non-profit organizations for families and caregivers of children with CHD to receive support, education and resources.  Donations help them support a large community of people affected by CHD.

If you know of any other ways for people to get involved with CHD, please leave a comment on this blog so that I can share them.  Thanks!

Awareness is critical and can be life-saving.

LMW

February 12, 2013 - Slight Correction re: CHD Screening

I inadvertently posted some misleading information the other day that I want to correct. My sister has informed me of the following:

"Kyle did have the pulse ox screening. But since his PDA duct** was still open when they did it, he passed it with no problems. His major defect, the coarctation of the aorta, was such that the screening did not pick up on it and the screening was not designed to pick up on his other defects. That does not take anything away from pulse ox screening. It is important, and relatively cheap, and should be done on all babies. The most important screening is the/are the ultrasounds that pregnant women receive. Better training and expertise of the ultrasound technicans can identify defects in-utero allowing at the minimum for discussions and planning to occur. According to Dr. ----, at the moment, there is very little that can be done before birth (in-utero) to fix defects that are identified."

**the PDA duct is the vein present in utero allowing blood to flow by bypassing the lungs. It basically acts as the baby's aorta. When the baby is a few days old the duct should close and the aorta completely takes over now that the lungs are fully developed. Kyle's most critical defect was that his aorta was too narrow to function. So he passed his pulse ox screening when his duct was open and blood/oxygen were flowing well, but when his duct closed his aorta was not able to take over and that is when he became critically ill.**

I just didn't want to leave the impression that Kyle didn't get the pulse ox screening. Sorry!

LMW

February 12, 2013 - Congenital Heart Defect Awareness: Someone You Know

Given the statistics that 1 in every 100 babies is born with CHD...as I've written, that's 40,000 alone in the US every year...it is very likely that YOU know someone whose life has been affected by CHD.  Maybe it is a member of your family or your friend or your colleague...or one of their family members or friends.  Maybe you know me and my family. 

Or maybe you were a big fan of Teddy Bruschi when he played for the Pats for 13 seasons.

Or maybe you loved the little Darth Vader in the VW commercial, where he uses his powers to start his Dad's car. 

Or maybe you love the music of the Clash, whose frontman Joe Strummer died of undiagnosed CHD at age 50.

Or maybe you thought John Ritter was a really funny actor (Three's Company!) before he passed away of undiagnosed CHD at age 55.

Or maybe you think that "Every Rose Has Its Thorn", just like Brett Michaels.

Or maybe you didn't know that Sly Stallone and Katherine Heigl both have children with CHD.

Or maybe you have always swooned over Brian Littrell and the Backstreet Boys.

And it doesn't matter at all if it is a famous person, or not.  CHD affects thousands of families in sad, scary, and painful ways...also in triumphant and proud ways for survivors.

This is a really touching article that I encourage you to read, about the family of San Francisco 49s quarterback Colin Kaepernick's family (he just had a tough loss to the Ravens in the Super Bowl).  They lost two newborn sons to CHD and find ways to stay involved with the cause even now, decades later: http://www.huffingtonpost.com/2013/01/31/kaepernick-family-losses-parents_n_2595082.html 

It is a pretty serious birth defect that very few people know anything about. If this is a cause that you care about, tomorrow I'll tell you some ways that you can help.  

LMW

February 11, 2013 - Congenital Heart Defect Causes and Risks

There is no known official prevention for CHD because the causes seem to be some combination of genetic and/or environmental factors that cannot be specifically identified.   The information below is pretty general, so it seems that early detection is the best way for babies with CHD to have a fighting chance.

-------

As quoted from the March of Dimes:

What causes congenital heart defects?
In most cases, scientists do not know what makes a baby's heart develop abnormally. Genetic and environmental factors appear to play roles.

Scientists are making progress in understanding the genetics of heart defects. Since the 1990s, they have identified about 10 gene mutations (changes) that can cause isolated (not accompanied by other birth defects) heart defects (3). For example, a March of Dimes grantee identified a gene that can cause a heart defect called an atrial septal defect (a hole between the upper chambers of the heart), and one that may contribute to hypoplastic left heart syndrome (underdevelopment of the heart’s main pumping chamber) (4, 5).

Environmental factors can contribute to congenital heart defects. Women who contract rubella (German measles) during the first three months of pregnancy have a high risk of having a baby with a heart defect. Other viral infections, such as the flu, also may contribute, as may exposure to certain industrial chemicals (solvents) (2). Some studies suggest that drinking alcohol or using cocaine in pregnancy may increase the risk of heart defects (2).

Certain medications increase the risk. These include (2):

• The acne medication isotretinoin (Accutane and other brand names)
• Thalidomide (approved only for a rare, severe skin disorder, but sometimes used for other conditions)
• Certain anti-seizure medications

Some studies suggest that first-trimester use of trimethoprim-sulfonamide (a combination of antibiotics sometimes used to treat urinary-tract infections) may increase the risk of heart defects (2).

Certain chronic illnesses in the mother, such as diabetes, may contribute to heart defects (2). However, women with diabetes can reduce their risk by making sure their blood sugar levels are well controlled before becoming pregnant.

Heart defects can be part of a wider pattern of birth defects. For example, at least 30 percent of children with chromosomal abnormalities, such as Down syndrome (intellectual disabilities and physical birth defects) and Turner syndrome (short stature and lack of sexual development), have heart defects (3). Children with Down syndrome, Turner syndrome and certain other chromosomal abnormalities should be routinely evaluated for heart defects.

Heart defects also are common in children with a variety of inherited disorders, including Noonan syndrome (short stature, learning disabilities), velocardiofacial syndrome (craniofacial defects and immune deficiencies), Holt-Oram syndrome (limb defects) and Alagille syndrome (liver, skeletal and eye defects) (3). 

--------

Additionally, parents who have had one child with CHD do have a chance of other children being born with the same or similar defects.  Depending on the specific defect, the statistics vary but all parents of children with CHD are encouraged to have serious discussions with pediatric cardiologists and/or genetic counselors before getting pregnant again.

LMW

February 10, 2013 - Congenital Heart Defect Screening

The following excerpts or paraphrases are taken directly from the Center for Disease Control at http://www.cdc.gov/ncbddd/pediatricgenetics/CCHDscreening.html.

Screening for Critical Congenital Heart Defects

Congenital heart defects (CHDs) account for nearly 30% of infant deaths due to birth defects.  In the United States, about 7,200 (or 18 per 10,000) babies born every year have critical congenital heart defects,  which usually require surgery or catheter intervention in the first year of life. CCHDs can potentially be detected using pulse oximetry screening, which is a test to determine the amount of oxygen in the blood and pulse rate. Pulse oximetry screening is most likely to detect seven of the CCHDs. 

The Importance of Screening for Critical Congenital Heart Defects

Some babies born with a heart defect appear healthy at first and can be sent home with their families before their heart defect is detected. It is estimated that about 300 infants with an unrecognized CCHD are discharged each year from newborn nurseries in the United States.*** These babies are at risk of having serious complications within the first few days or weeks of life and often require emergency care.

Newborn screening using pulse oximetry can identify some infants with a CCHD before they show signs of a CCHD. Once identified, babies with a CCHD can be seen by cardiologists and can receive medications or surgery that can prevent disability and death early in life. 

When and How Babies Are Screened

Pulse oximetry is a simple bedside test to determine the amount of oxygen in a baby’s blood and the baby’s pulse rate. Low levels of oxygen in the blood can be a sign of a CCHD. The test is done using a machine called a pulse oximeter, with sensors placed on the baby’s skin. The test is painless and takes only a few minutes. Screening is done when a baby is 24 to 48 hours of age, or as late as possible if the baby is to be discharged from the hospital before he or she is 24 hours of age. 

Pulse oximetry screening does not replace a complete history and physical examination, which sometimes can detect a CCHD before the development of low levels of oxygen in the blood. Pulse oximetry screening, therefore, should be used along with the physical examination.

CCHD Screening Results

Basically, the test does not detect all CCHDs.  But if a baby fails the test - indicating that there is not enough oxygen in his or her blood - then a pediatric cardiologist can follow up with more tests, like an echocardiogram to figure out if there is a serious problem.  Babies who are found to have a CCHD also might be evaluated by a clinical geneticist. This could help identify genetic syndromes associated with CCHDs and inform families about future risks.

***This describes my nephew, Kyle, exactly.  He was deemed perfectly healthy and sent home from the hospital around 4 days old (he was delivered via c-section).  By 7 days old there was almost no oxygen circulating in his blood - he was sweating, breathing fast, and turned blue.  It is my understanding that his heart stopped beating and they revived him in the emergency room, which began the next few weeks of his fight to survive.*** 

It is important for expectant families to talk to their pediatricians and maternity wards about pulse oximetry screening before taking newborn babies home from the hospital.  

LMW 

February 9, 2013 - Congenital Heart Defect Signs and Symptoms

Parents should be alert to the following symptoms in infancy:

• Tires easily during feeding (i.e. falls asleep before feeding finishes)
• Sweating around the head, especially during feeding.
• Fast breathing when at rest or sleeping
• Pale or bluish skin color
• Poor weight gain
• Sleeps a lot – not playful or curious for any length of time
• Puffy face, hands, and/or feet
• Often irritable, difficult to console

(I know that Kyle's initial symptoms included sweating, fast breathing and blue skin color.)

Some children with CHDs may not have any symptoms until later in childhood. Things to look for include:

• Gets out of breath during play
• Difficulty “keeping up” with playmates
• Tires easily/sleeps a lot
• Change in color during active play or sports (looks pale/has a bluish tint around mouth and nose)
• Frequent colds and respiratory illnesses
• Slow growth and weight gain/poor appetite
• Complains of chest pain and/or heart pounding

If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist.

Source: The Congenital Heart Information Network http://tchin.org/aware/art/CHD-HD-Brochure.pdf

LMW

February 8, 2013 - Congenital Heart Defect Facts

• It is estimated that 40,000 babies are born each year with Congenital Heart Defects in the United States alone.
• CHD is the most frequently occurring birth defect and is a leading cause of birth-defect related deaths worldwide.
• More children die of CHD than all childhood cancers combined.
• 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.
• 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.
• Many cases of Sudden Cardiac Death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

Despite these statistics, newborns and teen-aged athletes are NOT routinely screened for Congenital Heart Defects and a disproportionately small amount of funding is available for research and support.  Source: The Congenital Heart Information Network (http://tchin.org/aware/art/CHD-HD-Brochure.pdf)

For more information, or to donate towards CHD research, please visit: http://www.childrensheartfoundation.org/

LMW

February 7, 2013 - Congenital Heart Defect Awareness Week

If you read this blog regularly, you'll know that in October my nephew, Kyle, was 27 days old when he died of complications of surgery to repair one of the four congenital heart defects (CHD) he was born with.  His parents, my sister and her husband, remain heartbroken over the loss of their sweet baby boy, as am I and the rest of Kyle's family and friends.

I know that my sister has been doing a lot of research about CHD since Kyle passed away.  When she learned that this week is "Congenital Heart Defect Awareness Week" she instantly took action.  She wrote to her Governor to ask for his support in raising awareness for this common birth defect. A few weeks later she received this proclamation in the mail from him:

It is certainly a nice way to honor the families who have been affected by CHD, and especially to honor those, like Kyle, whose lives have been far too short because of CHD.

Everyday this week I will share just a little bit of information about CHD, in the hope of raising a little bit of awareness about this birth defect that seems mostly to be under or off the radar for most families but affects 40,000 babies in the United States every year.  Perhaps a little bit of knowledge can go a long way towards saving a life.

To start, this is from the from the Congenital Heart Information Network

"Government officials throughout the world have proclaimed February 7th–14th as “Congenital Heart Defect Awareness Week”. To mark this important occasion, an international coalition of families, individuals, non-profit organizations, support groups, and health professionals participate in a campaign to increase public awareness of Congenital Heart Defects and Childhood Heart Disease. By sharing our experiences and providing information to the public, we hope to raise awareness about conditions that affect approximately 40,000 babies each year in the United States.

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

(http://tchin.org/aware/art/CHD-HD-Brochure.pdf)

LMW