|
|
|
|
|
|
Celebrating National CHD Awareness Month |
National Congenital Heart Defect Awareness Week will be celebrated next week, February 7-14, 2011. Many of our chapters are finding ways to celebrate this next week and throughout the month of February as we spread awareness for CHD. - The South Florida chapter is having their heart walk on February 26th.
- The Metro Detroit chapter is hosting its 2nd Annual RAISE a glass to CHD AWARENESS Silent Auction and Wine Tasting on Saturday, February 5th. It's a kickoff to CHD Awareness in the local area. They will also host their monthly Community Gathering the last Monday of the month and this gathering will be dedicated to brainstorming ways to raise awareness locally.
- The Northern New Jersey Chapter will be celebrating by donating their time at three local hospitals doing sand art with Heart children and their Families at each hospitals while hosting a CHD Awareness Party. In addition they are holding a Beefsteak Dinner and LIVE Auction and donating part of the money we raise to this event to CHD research.
- The Metro Philly Chapter has two events planned for this month. They are holding a month long fundraiser with www.classiccake.com in which a portion of each specialty cupcake sold will go to their IMH chapter. They are also holding a Social and Tricky Tray Auction on February 26th.
- The National chapter in Houston is having their annual heart walk called "Keep the Beat" on February 19th with a family walk and then activities for the whole family after the walk.
You can visit www.itsmyheart.org to learn about all of these opportunities to get involved with CHD awareness. There are many other ways to celebrate CHD Awareness Week. It can just be as simple as bringing goodies to the heart floor of your local hospital or putting a post on your blog or facebook explaining CHD to your friends. Happy CHD Awareness Week! Please take this week to share your story! 
|
|
 |
Follow Us on the Web
|
|
|
|
| Heart Journey |
This is the Heart Journey of Ashley Drury, an adult living with CHD
Born January 30th, 1985, I was a big healthy baby. At 8 lbs 14 oz, I was the picture of a perfectly healthy baby. However, once I was born the doctors noticed I had a heart condition. The condition is Tetralogy of Fallot. I had my first open heart surgery at the age of eight months old at Doernbecher Children's Hospital at OHSU. During this surgery, they covered the hole in my heart with a patch. Since then, I have had yearly heart check ups (echocardiograms and EKG's). I was always a very healthy child. I have been fortunate enough to never have to take any medication. I was a dancer for many years of my life, and I believe dancing kept my heart strong. :) My life has been very normal, and I have been so lucky to be so healthy! There are times I have forgotten that I even have a heart condition. Of course, the scar from my first surgery is a great reminder. :) In April of 2009, I found out I was pregnant. I was a bit worried if I would be able to have a healthy pregnancy and delivery. I emailed my doctor right away. He responded that I would "do very well" with a pregnancy. My pregnancy couldn't have been better! I was extremely healthy, my baby was healthy, and her heart was 100% normal. On December 28th, 2009, I delivered a beautiful baby girl, Isabella. The delivery was great, and there were never any complications. I was so happy to have such a beautiful healthy baby. In August of 2010, I had an appointment with my cardiologist. The appointment was like any other appointment I have had, except at the end. He told me he was wanted to send me to OHSU for a cardiac MRI. He said he considered me healthy, however there were signs that were pointing toward a surgery at some point. He needed a second opinion. In November of 2010, I had my MRI and consultation at OHSU. I had four doctors in and out of the room, taking my vitals and asking me questions. After much discussion, they came to the conclusion that I should have another surgery in the next 3 to 6 months. This next surgery will be for a valve replacement. As I am feeling a bit scared, I am also trying to take what I have been given and make the best experience out of it. Having a child and being engaged does make it so much more emotional. However, I know I am strong and I can get through this!! I am planning for my surgery to be scheduled in February 2011. I have started a fundraiser for Doernbecher Children's Hospital. I will be making a special trip to OHSU before my surgery to donate stuffed animals to the babies and children in the heart center. Since I was once a baby in recovery at Doernbecher, this fundraiser is very dear to my heart. I have started a blog: ashleydrurymylife.blogspot.com On my blog, you can read about me and about the fundraiser I have started. I am also planning on keeping everyone posted via my blog, right before my surgery, and then during my recovery. I have had some readers send in their stories and I have shared their stories on my blog as well. I like to think of myself as a positive woman. I try to find the best out of the toughest situations. Life sometimes hands you situations that you may not be ready for. That's when you take what you have been given and make the best of it. ** Since Ashley wrote this story, she has learned that her valve replacement surgery will be on February 9th. 
|
Sharing our Journeys
|  Share your story with It's My Heart! We want to hear about your Heart Journey. Your story may be selected to be highlighted in our monthly national newsletter! Just send us your story written in a few paragraphs-be sure to include your (or your child's) diagnosis (how and when), your treatment plan, and an update on how you (or your child) is doing now. Please send a picture to go with your story and submit it at heartstories@itsmyheart.org |
| CHD in the News | |
OHSU fixes complex heart problems without open-heart surgery
From EurekaAlert.com
Feb. 3, 2011
Oregon Health & Science University is one of a few centers in the nation qualified to use the first FDA-approved pulmonary heart valve that can be implanted through the leg
PORTLAND, Ore. -- The pediatric cardiac team at Oregon Health & Science University Doernbecher Children's Hospital is the first in the region and one of a handful in the nation to implant a pulmonary heart valve without open-heart surgery.
To date, four patients have received the landmark valve in the OHSU Pediatric and Adult Congenital Cardiac Catheterization Lab. All reported immediate improvement in their energy level and stamina.
The device, called the Medtronic MelodyŽ Transcatheter Pulmonary Valve, recently was approved by the Food and Drug Administration. The valve is used to replace a narrow or leaky pulmonary valve "conduit" - a tube connecting the heart to the lungs - in children and adults who previously have undergone surgery to correct a congenital heart defect. Until now, pulmonary valve replacements have required open-heart surgery.
The Melody valve is inserted into a tiny opening in the leg and guided by a catheter through blood vessels into the heart. Once the valve is correctly positioned, a balloon on the end of the catheter is inflated, delivering the valve and immediately correcting blood flow.
"Children born with blocked or leaky heart valves can undergo as many as four open-heart surgeries before reaching adulthood to replace conduits that have worn out or that they've outgrown, and each time the risk of surgery goes up," said Grant Burch, M.D., director of the OHSU Pediatric and Adult Congenital Cardiac Catheterization Lab and associate professor of pediatric cardiology at OHSU Doernbecher Children's Hospital. "The Melody extends the useful life of an implanted valve conduit and is very likely to reduce the number of open-heart operations a patient might require over a lifetime."
"This device is not going to abolish the need for open-heart surgery, but it does provide a safe and effective alternative to surgery for many children and young adults with congenital heart disease," explained Burch.
"The remarkable thing about this procedure is that the valve is placed into the beating heart through a vein in the patient's leg. After the procedure, patients spend a night on the hospital ward and are discharged home the following morning," said Laurie Armsby, M.D., associate professor of pediatric cardiology at OHSU Doernbecher and Burch's partner in the OHSU Pediatric and Adult Congenital Cardiac Catheterization Lab. "This device brings us closer to the goal of providing children less invasive alternatives to surgery for the treatment of congenital heart disease."
More than 1,700 patients have been implanted worldwide since the valve was approved for commercial use in Europe in 2006. According to the FDA, an estimated 1,000 U.S. children and adults with congenital heart disease will qualify for the new valve annually.
Drs. Burch and Armsby are the only pediatric cardiologists in Oregon with advanced training in interventional cardiology. Together they perform more than 300 cardiac catheterizations in newborns, children, and adults with congenital heart disease each year.
The FDA approved the Melody valve under the Humanitarian Device Exemption provision, which allows for the use of devices determined to be safe and whose benefits to health outweigh the risk of injury or illness. A Humanitarian Use Device (HUD) is intended to benefit patients by treating or diagnosing a disease or condition that affects or is manifested in fewer than 4,000 individuals in the United States per year. The exemption is only given when there are no comparable devices available to treat or diagnose the disease or condition.
|
| Upcoming Events |
Detroit Chapter: Raise a Glass to CHD Awareness
Wine Tasting and Silent Auction
Saturday, February 5, 2011 7:00pm - 10:00pm
Andiamo Novi
42705 Grand River Avenue
Novi, Michigan
Fresno Chapter: CHD Awareness Run/Walk
Saturday, February 12, 2011
Woodward Park, Fresno, CA
Register online here.
National : Keep the Beat It's My Heart 5th Annual CHD Awareness Walk Saturday, February 19, 2011
Sam Houston Park, Houston, Texas
Register online here.
1st Annual It's My Heart South Florida Chapter Congenital Heart Defect Awareness Fun Walk/Run
Saturday, February 26, 2011 Tradewinds Park, Coconut Creek, Florida Register online here. "Touched by a Broken Heart" Mankato's 1st Annual CHD Awareness
5K Walk/Run to Benefit the IMH Minnesota Chapter
Saturday, May 7, 2011 Sibley Park, Mankato, Minnesota
Register online here.
|
| Family Camp 2011 |  Family Camp 2011: Camp Bon Coeur
March 18-March 20
Acadian Baptist Center in Eunice, Louisiana
Joining one another in fun and excitement while experiencing a taste of Camp Bon Coeur is what family camp is all about! Be sure not to miss out!
All First time families come free!!! Download the forms here. If you have questions email Ben at ben@heartcamp.com.
|
|
CHD Birthdays
| |
  
Jake Butler McCathran Wesley Fleming Jaxson Ramsey Coffman
February 1, 2007 February 2, 2010 February 13, 2009
  
Asher Higgins Zachary Shafer Mackenzie Peterson
February 16, 2010 February 19, 2008 February 19, 2009
  
Henry Johnston Benjamin Camit Paula Glorie Vicente
February 20, 2007 February 21, 2008 February 21, 2008
Is your child born in March? Please send us your child's birthday and picture so we can all celebrate your child's birth with you! E-mail to
newsletter@itsmyheart.org.
We also want to celebrate all your angel's birthdays too! So, please send us their information so we can include them as well!
|
|
Family Matching |
When you or a loved one is faced with the diagnosis of a CHD, it is important to know that you are not alone. Through our extensive Family Matching database you are able to connect with other families who have gone through or are going through similar situations. You will be matched based upon diagnosis and/or proximity. Sharing your experiences is an important way to connect and learn from others' experiences. If you would like to take part in this program please go online at www.itsmyheart.org and fill out our Family Matching form. |
|
It's My Heart Chapters | |
The mission of It's My Heart provides strength and support for those affected by Heart Defects. It's My Heart exists to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It's My Heart creates alliances and networks among families, groups, hospitals, and the community.
The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.
If you are interested in organizing a chapter or walk in your area, please contact the It's My Heart National Office at (713) 334.4244 or (888) HEART.07 or e-mail chapters@itsmyheart.org.
Click here to find the IMH Chapter nearest you:
Fresno, CaliforniaSouth Florida Northern New Jersey
Cleveland, Ohio
Columbus, Ohio
Portland, Oregon
Metro Philly
|
|
|
|
|
|
