Archive for August, 2009

Golf For CHD

Knoxville, Tenn. – Saving Little Hearts, a Knoxville-based nonprofit organization serving children with heart defects, will host its 7th annual mini golf tournament on Sunday, October 11, at 2pm.

Held at Sir Goony’s in Farragut, the event helps provide support for children affected by congenital heart defects and their families. This year’s tournament will feature visits from University of Tennessee Athletes, prizes, and lunch.

Information and online registration is available at http://www.savinglittlehearts.org or by calling Karin Coulter at 866-748-4605.

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About Saving Little Hearts
Saving Little Hearts has been helping children with congenital heart defects and their families since 2002. Saving Little Hearts is dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information. Saving Little Hearts also strives to provide enriching, educational and fun experiences for these children which will help them build friendships and confidence.

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This would be a great tax write off for any businesses or individuals who would like to sponsor this event.  This little organization does such a tremendous job for helping CHD families.  Sponsorship in their tournament starts as low as $50.

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August 26, 2009 at 2:21 pm Leave a comment

CHD Quilt Project

Quilt # 35

Honors the following individuals

Row 1:  Cody Tarver, Jude T. Stephey, Harrison Thomas Pitre, Landon Dayne Bell, Matthew Bennion Reynolds, Peyton “Clark Kent” Williams
Row 2:  Charles Thomas Ivey, Douglas Neal Ratcliff, Maeghan Elizabeth Edwards, Colton John Sullivan, Nicolas Aiden Fiaschetti, Cody Robert Calvert
Row 3:  Alexander Joseph Kaplan, Kylie Raven Busch, Lexi Annelease Hayes,  Maclain Ryan Grieb, Jordyn Cathryn Turner, Madeline Murphy
Row 4:  Cort Stevens, Katelyn Christine Steffen, Nell O’Hagan, Samuel Jason Bocanegra, Logan T. Lee, Miles Eustice
Row 5:  Jayce Jones, Trinity Terese Kempker, Jeremy Matthew Kostelnik.
Logan Sprole, Mollie Rose Hatcher, Matthew Adrian Valle-Garza
Row 6:  Gregory Jon “Ice” Lusignan, Noah Daniel Hummer, Trista Snow Lawler, Brody Rae Trader, Noah Kai Hughes, Andrew  Reddick
Row 7:  Jacob Darren Peterson, Chaney Warner Combs, Caroline Raye Frazier,
Abigayle Marie Wardell, David Michael Piotrski, Travis Mendoza
The above quilt is a wonderful project by CHD Awareness Quilt Project.  This project makes quilts that honors CHD children and adults.  The quilt above has a little block for my Abby (Row 7).  There are 41 quilts so far and each block is made to honor each individual.  At the CHD quilt website you can view all quilts made, register someone you know with CHD to have a block made for them, see where the quilts are on display or will be on display, shop for cute little heart items that support CHD awarness, and more.  Check out this great website!!

August 22, 2009 at 6:30 pm Leave a comment

Pulse Ox Testing Could Save Lives

If you have had a child, you know that your baby is given a variety of newborn screening tests for inherited and genetic disease.  The most common of these tests is the PKU test, which involves a heel poking and squeezing the blood into various circles on a piece of paper.  The test is then repeated at 2 weeks at the doctor’s office.  Consider the following information from the website http://www.congenitalheartdefects.com/legislation.html:

“According to the Center for Disease Control and Prevention website , “One of every 33 babies is born with a birth defect. A birth defect can affect almost any part of the body. The well being of the child depends mostly on which organ or body part is involved and how much it is affected. ”

“Within 48 hours of a child’s birth, a sample of blood is obtained from a “heel stick,” and the blood is analyzed for (up to) 35 treatable diseases (depends on the state), including phenylketonuria, sickle cell disease, and hypothyroidism”.

“Each year, at least 4 million babies in the United States are tested for these diseases, and severe disorders are detected in about 3,000 newborns.” This means one of every 1,300 babies tests positive for one of these diseases .

“Many birth defects affect the heart. About 1 in every 100 babies is born with a heart defect. Heart defects make up about one-third to one-fourth of all birth defects . Some of these heart defects can be serious, and a few are very severe. In some places of the world, heart defects cause half of all deaths from birth defects in children less than 1 year of age. ”

Imagine how many newborn children could be helped with a NON-INVASIVE oxygen saturation level test!

The information is sobering and yet still, CHD’s are not screened for in newborns.  On August 21, 2009 the New York Times ran an article which included the following story:

“In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.”

The article was written by By Darshak Sanghavi, M.D., a pediatric cardiologist.  Dr. Sanghavi goes on to explain that pulse ox screening for newborns could diagnose three-quarters of the babies whose congenital heart defects were missed or could not be diagnosed otherwise and would have been sent home.  Often times these infants are not diagnosed with CHD until after it is too late, post-mortem.  Dr. Sanghavi goes on to say that pulse oximetry testing is non-invasive and hospitals are already equipped with pulse ox machines.  The cost would be similar to the cost of the PKU screening or hypothyroidism screening.  He estimates that 1 out of every 2000 babies screened would be diagnosed with a CHD and treated, thus saving lives of babies who would otherwise be sent home without being diagnosed.

It seems that medical associations, doctors and nurses alike all agree that pulse ox screening could save lives and help in missing the diagnosis before serious problems occur.  However, they also agree that more trials need to be done in order to solidify the need for the tests.  According the American Heart Association, the tests run thus far have varied from being 0%-100% accurate.  It is agreed that during the first 24 hours false negatives are more common as babies pulse ox levels vary.  After the first 24 hours however, it seems that the screening is generally very accurate.  Because of these variances and discrepancies, the American Heart Association has concluded that “Currently, CCHD is not detected in some newborns until after their hospital discharge, which results in significant morbidity and occasional mortality. Furthermore, routine pulse oximetry performed on asymptomatic newborns after 24 hours of life, but before hospital discharge, may detect CCHD. Routine pulse oximetry performed after 24 hours in hospitals that have on-site pediatric cardiovascular services incurs very low cost and risk of harm. Future studies in larger populations and across a broad range of newborn delivery systems are needed to determine whether this practice should become standard of care in the routine assessment of the neonate.”  In other words more testing is needed.  Unfortunately, many professionals have taken this to mean that the American Heart Association doesn’t feel the testing is necessary or useful.  Charles Bankhead of the website MedPage today, which is supposed to be a useful tool for medical professionals, has written an article entitled “Routine Pulse Oximetry for Newborns Not Supported”.  This article gives the erroneous assumption that because of the high rate of different outcomes of the studies already performed, the American Heart Association doesn’t support the testing, when in fact the AHA stated clearly on their website that it does support testing and would like more trials to be run so the screening of infants can be put into place.  The article on Medpagetoday.com actually goes so far as to list an action point in the article in which physicians are encouraged toExplain to patients that the American Heart Association and American Academy of Pediatrics have concluded that a test to detect congenital heart disease in newborns should not be performed routinely.”

These statements are harmful to the future of pulse ox screening in infants.  What can we do?  Get involved!!  Contact your local congress representatives and senators and tell them you would like to see a bill that would mandate pulse ox testing in infants.  Contact the American Heart Association asking them what can be done and start a grass roots movement with a petition asking laws to be passed the mandate this life saving testing.  Very few states have any kind of legislation to support CHD screening.  Let’s save some lives and start by screening for the Number 1 birth defect, heart defects.

August 22, 2009 at 1:32 am Leave a comment

Heart Facts from It’s My Heart–A Non Profit Group

The following are some facts given by a great non-profit organization called It’s My Heart.  Their website has some great information and great ways to get involved, find support groups and local chapters in your area and just learn more about CHD!  They also have some fun shopping I didn’t know about when I made my other post on shopping that helps.  Check out their great store, and remember, buying items here helps out CHD research, awareness, and support.
  • Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
  • Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
  • The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
  • This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
  • Though research is ongoing, at least 35 defects have now been identified.
  • 4-8% born with CHD have Hypoplastic Left Heart Syndrome
  • 4-10% born with CHD have Atrioventricular Septal Defects
  • 8-11% born with CHD have Coarctation of the Aorta
  • 9-14% born with CHD have Tetralogy of Fallot
  • 10-11% born with CHD have Transposition of the Great Arteries
  • 14-16% born with CHD have Ventricular Septal Defects
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
We really need to find ways to get more research done!!!  Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.

Yet funding for pediatric cancer research is 5 times higher than funding for Congenital Heart Defects.

August 19, 2009 at 8:29 pm Leave a comment

Check out my Slide Show!

August 18, 2009 at 7:26 pm Leave a comment

Daily Living with a CHD

I should start this post with a disclaimer….in fact I think this disclaimer should be a DISCLAIMER. All CHD’s are different.  My daughter’s Tetralogy of Fallot is very different from Hypoplastic Left Heart Syndrome.  And, each case of CHD is unique in itself.  Having said that, I wanted to look at how CHD has changed my life and the life of my daughter and family.  Beyond the obvious huge life altering way the disease affects, everyday living is a bit different for us.  My daughter had her surgery at 5-months-old.  Her pulmonary valve still leaks drastically and she will be facing another open heart surgery next year.  So, she still has heart issues and precautions.  Here are the ways off the top of my head that our lives are different because of her Tetralogy.

  • I am a verified germaphobe.  Not in the usual sense where dirt bothers me and dirty hands are beyond reproach.  No, the real germs and bacteria that live and grow on things unseen to the naked eye.  I worry about drinking fountains, public restrooms, doctor’s office pens and door handles.  I worry about all the kids at my daughter’s school and what germs they are carrying around.  I know it sounds funny, but for us, the wrong bacteria can be serious.  Strep throat is something that we can’t mess around with.  If the infection gets into Abby’s bloodstream, her heart surgery would need to be redone to replace the infected patches.  Chicken Pox could kill her as well as the flu.  So, I have to be aware.  I can’t keep her from every bug out there but we go to the doctor at the first sign of a sickness.  We don’t wait it out.  We get her checked and get her on antibiotics if need be as soon as possible.  We also get the flu shot every year!!  The whole family!!  Abby’s little brothers complain but, we do it for her.
  • Dehydration usually means a hospital stay.  Abby’s heart can’t handle dehydration.  She gets chest pains and her heart races.  We have learned from experience that it is better to keep Abby hydrated.  During the summer I don’t send her anywhere without a water bottle.  She also takes a water bottle to school.  We don’t like to go the hospital for IV hydration.
  • Abby is tiny.  This could be due to genetics.  It could be due to her genetic scoliosis.  But, we have to give some credit to her heart defect.  She is nine-years-old and fits loosely into a 7 slim.  She weighs around 40 pounds and is shorter than her six-year-old brother.  This has been emotionally hard for Abby.  She hated it when her friends picked her up and carried her around.   She always gets little nicknames from them like “tiny woman” or “littles”.  She bears it well but it is an emotional issue that we deal with often.
  • Sports are a no go.  It isn’t that Abby can’t play sports.  She just doesn’t have the stamina for them.  Her friends run circles around her and she get frustrated when attempting to keep up.  She is always “it” in tag and she doesn’t have the physical ability to play hard and long.  This can be frustrating to Abby.  Lots of kids with Tetralogy who don’t have leaky valves don’t have exercise intolerance after surgery.  Those who have regurgitation often have hard times with sports.  That is okay for Abby though…she has found other interests in the piano and singing.
  • Emotionally life has been sweeter.  I know it sounds strange that a CHD would make life better.  I do know that this CHD in our first child brought my husband and I together.  It cemented our relationship.  I look at my daughter and am reminded of what a blessing each day is with her.  Those feelings carry over into my other three children as well.  I have learned what faith means.  I have grown closer to my Savior and his Divine love and Divine wisdom.  The spirit in our home is a little sweeter.  Reflection time is a little more often and my love for my children and husband is shown more openly and given freely daily.

I have always loved the quote by Samuel Taylor Coleridge “What comes from the heart goes to the heart.”  I understand that quote so much now and on so many deeper levels.  I have learned a lot because of CHD and like nearly all CHD families I know, life is somehow more meaningful and every moment is sweeter because life is also fragile and fleeting.

August 17, 2009 at 10:47 pm Leave a comment

CHD Shopping That Makes a Difference

Today, I could use some therapy…shopping therapy that is.  What better way to shop than to buy CHD products that make a difference!!  So, here is my list of great items you can buy that promote awareness, tout your proud CHD heritage, benefit CHD charities, and are just plain fun!

  • Personalized Saving LIttle Heart Tees!

    Personalized Saving LIttle Heart Tees!

    Personalized “Saving Little Heart” T-shirts from Luna B Tees.  The link is http://lunabtee.com/item_90/Personalized-Saving-Little-Hearts-Shirt.htm.  These are adorable!!  $10.00 from every purchase goes directly to the organization Saving Little Hearts in Nashville, Tn.  This organization does loads of good for heart patients and their families.  They make and distribute hospital care packages, they raise awareness, they provide parent matching, and much much more!!  So, if you can buy the shirts for yourself, your heart patient, and everyone else that might like them!

  • CHIN hope heart necklace

    CHIN hope heart necklace

    These beautiful silver necklaces can be purchased at http://www.tchin.org.  They proceeds from the necklaces help raise awareness and help CHIN provide support and education to people.

  • Gracies Theme

    Gracie's Theme

    Paul Cardall is a talented musician who has lived his whole life battling and winning in his fight against CHD.  His music is inspiring and uplifting.  His newest release includes a touching piano solo by Paul titled Gracie’s Theme.  It was inspired by a beautiful heart angel named Gracie.  You can order the CD, called Sacred Piano, at www.paulcardall.com.  You can read more about Paul and his many other CD’s at www.livingforeden.com.

So there is my short-list.  I’ll add more as I find them from time-to-time!!  Happy shopping!!

August 15, 2009 at 2:35 am 2 comments

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