|
|
|
|
|
|
Monthly Spotlight: IMH 2011 National CHD Conference | 
It's My Heart will host its 3rd annual National CHD conference this fall, September 23-25. We are looking forward to a informative and inspiring weekend in which we can connect with other CHD families.
The weekend will kick-up at the Meet and Greet on September 23rd at the JW Marriott in Houston from 5:00-8:00 p.m. This is a free event in which finger foods and beverages will be served. It is family friendly and a great opportunity for those from out of town to connect with other families. If you are coming from out of town, we also have a group rate to stay at the JW Marriott. Saturday the conference will be held from 8:00-4:00 at the United Way center in Houston. A light breakfast and a banquet lunch will be served. Come to hear Mary Kay Benton, RN, BSN from the Texas Adult Congenital Heart Program as well as Dr. William E. "Billy" Cohn, a surgeon and researcher at the Texas Heart Institute. In addition to speaking, Dr. Cohn not only performs surgery but is very talented performing magic shows which he has prepared to share during lunch time. You won't want to miss this! There will be break-out sessions specific for each audience: teens, parents and caregivers, and adults with CHD. The Conference is for kids, too! Children 5 years and up can come learn more about CHD. They can even bring their stuffed animals to the "Teddy Bear Clinic" to get them checked out! Local Child Life Specialists will be conducting this fun day for the kids. Teens will participate with the main speakers geared towards both audiences. All break-out sessions are teen specific. They will be led by adults with CHD and can answer questions they might have. The cost for the conference is just $25 for adults and $10 for kids 18 and under. This includes a t-shirt. Sunday, we have a Family Fun Day planned at the Houston Astros' game. Tickets are free if you are registered for the conference! Please click here for more information and to register for this great weekend! |
|
CHD in the News
|
PICS-AICS face-off: Who should care for adult CHD patients?
|
BOSTON-Turf and training issues may create tension between pediatric cardiologists and interventionalists, raising the question: Should pediatric cardiologists treat adult congenital heart disease (CHD) patients? A debate on July 27 at this year's Pediatric and Adult Interventional Cardiac Symposium (PICS-AICS) ultimately concluded that the ideal situation could be a joint partnership between the pediatric cardiologist and interventionalist in the cath lab.
"Comorbid conditions frequently plague adults and need to be understood," Thomas J. Forbes , MD, director of the cardiac cath lab at the Children's Hospital of Michigan in Detroit, suggested during the debate. Forbes, a pediatric cardiologist, said that there must be a complete understanding of the patient's condition and patient's history.
Forbes said that the high level of care provided by pediatric cardiologists to the adult patient supports the argument that pediatric cardiologists should be treating this patient population, adding, "If it ain't broke, don't fix it.
"Adult interventional cardiologists equals attention deficit," said Forbes. He said that the amount of cases and number of interruptions that adult interventionalists endure during procedure may indicate trouble focusing. Forbes concluded that pediatric cardiologists should be the ones to treat adult CHD patients.
On the other side of the argument, John D. Carroll , MD, medical director of the Cardiac and Vascular Center at the University of Colorado Hospital in Denver, said, "Pediatric interventional cardiologists are extremely skilled, and have my respect and admiration, as I love performing procedures with them. However, they should not be caring for this adult subset of patients on their own."
Different training paths at the beginning of medical school make these two specialties very different, and usually there is "no significant mixing of pediatric or adult interventional care," said Carroll, who offered that both programs have very rigid training associated with them.
Citing the American Board of Internal Medicine, Carroll suggested that physicians must show objective documentation that they are trained in certain specialties, procedures and patient populations to be considered knowledgeable to perform procedures in certain patients.
"The medical literature is loaded with references addressing the strong opinion [that] children are not little adults," Carroll said. And in the same manner, "Adults are not big children."
Carroll urged that this issue is not just knowing about the procedure, but it also must center on understanding conditions such as atrial septal defect (ASD) or closure of the patent foramen ovale (PFO). "Procedures are very different in these patient populations," Carroll offered. "There is a whole different approach to dealing with the vessels of a 90-year-old compared with those of an 18-year-old."
He suggested that the Med-Ped training program guide of 2010 could be the solution to these types of underlying problems. Med-Ped training enables a physician to be board certified in both disciplines-pediatric cardiology and intervention-and have a skill set and experience in objective testing.
However, Carroll said that pediatric cardiologists should be present in the majority of interventions for adult CHD patients, such as complex adult CHD or coarctation of the aorta, among others. While Carroll acknowledged the turf issues between these two fields, he said that this should be a partnership, not circumvention.
Training pathways are different; however, there are also procedural differences that could require special vascular access and navigation issues in adults, said Carroll."The expertise of pediatric interventional cardiology is important for some adults," Carroll concluded. "Join us and don't circumvent adult physicians."
Story obtained from CardiovascularBusiness
www.cardiovascularbusiness.com
|
|
|
 |
|
Visit the NEW CHD Community
| |
Check out our new online community. The CHD Community was created for those affected by Congenital Heart Defects in order to have a place to share, meet others, seek/give advice and more. It is also FREE to join!
For safety purposes you do not have access to see all of the forums until you become a registered user. Please consider joining today and start connecting with others affected by the #1 birth defect. Some of the forums you will have access to once joining are:
-Expecting a CHD Newborn
-Hearts Remembered
-CHD Store
-Surgeries and Hospital Stays
-Adults with CHD
.................and more.
As part of the registration process you must be approved by our Admin Team. You will receive an email from info@chdcommunity.org that will contain two questions for you to answer and reply to in order to ensure as much as possible that our community members are truly those affected by CHD. We ask that you simply respond within two business days and after review we will either approve your registration or send you an email for more information. If you do not respond within the specified time we will assume that you might be a SPAM registrant and block your email address and possibly even your IP address. Should this happen out of error please contact our Site Admins at info@chdcommunity.org.
Please understand that these precautions are for the safety of our members.
We hope to have you join us and start connecting with others very soon!
From the heart,
CHD Community Admins
|
| Follow Us on the Web | 
|
|
|
| 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. |
|
Heart Journey
| Stephen and Spencer's Heart story, as told by Stephen:
At eighteen, my brother was diagnosed with a Bicuspid Aortic Valve and underwent surgery to correct the issue with an artificial valve. I decided that it would be a good idea for me to be checked also since I was born with a heart murmur. After a few tests, I was told I was fine. A few years down the road after a physical for the local volunteer fire department of which I was a member, I was told by their doctor after he did a EKG that I should go see a cardiologist. I did and after many more tests I was told that I had a Bicuspid Aortic valve and would need open heart surgery. This happened on Cinco De Mayo in 2004. I recuperated well and life went on. I married my wife in October of 2006, and we knew from the moment we met that we wanted to be together and have children. On November 10th of 2009, our twin boys (Cooper & Spencer) were born. Shortly after birth, they showed signs of breathing issues so the team from UCONN's NICU was brought down ansd they were transferred to the Unicersity of Connecticut's Medical Center, a Hospital that could better deal with their issues. The doctor on the transferring ambulance picked up on Spencer's heart murmur right away. After a week in the hospital, they came home and life went on. My wife and I decided that due to my history of heart issues, we would take the boys to a cardiologist and have them checked. Cooper went first, and we were told he had a normal heart. Then it was Spencer's turn. The cardiologist told us that he had a Bicuspid Aortic Valve.... My heart dropped and I cried. We asked the Cardiologist what would happen next, and she told us that we now have a baseline and for now, we will continue monitoring him and deal with any issues that arise if and when they do. Currently both Cooper and Spencer are healthy babies, and we are thankful that we had them checked and pray they stay healthy. **Correction from last month's Heart Journey: Maribeth's correct email is maribethgillis@gmail.com** |
|
CHD in the Media
|
From: Jacksonsun.com, Jackson, Tennessee
July 5, 2011
By: David Thomas
 | | Seager with William Witherspoon |
Before Kyle Seager was promoted to the Triple-A Tacoma Rainiers, the former Jackson Generals second baseman had a heart-to-heart talk with William Witherspoon. Witherspoon, 11, threw out the first pitch at the Jackson Generals' second annual Night of Heart at the Ballpark on June 3, and it was his introduction that caught Seager's attention.
Witherspoon, who will be a seventh-grader at Rose Hill Middle School this fall, was diagnosed with a form of congenital heart disease - ventricular septal defect (VSD) - when he was six weeks old. VSD, the most common form of congenital heart disease, is a deformity of the wall separating the bottom two chambers of the heart, according to the American Heart Association.
"I had the same surgery," Seager said. "I was stretching, getting ready for the game, and I was listening to what (Witherspoon) went through."
What Witherspoon went through was a six-and-a-half hour surgery to repair a hole in his heart when he was three years old. Seager worked his way over to Witherspoon and introduced himself. "(Seager) said he had VSD and had the same operation," Witherspoon said. "When Kyle came up to speak I was real surprised, because I didn't expect any one with heart problems like I had to be real big in sports.
"I couldn't believe I was talking to a professional sports player." Seager's operation occurred when he was five weeks old, and his parents were told a number of limitations were in his future. "No football, soccer, basketball or baseball," Seager said. "No contact sports." But Seager didn't get the message. Seager was selected by the Seattle Mariners in the third round of the 2009 Major League Baseball Draft after playing three seasons at the University of North Carolina. He was named first team All-Atlantic Coast Conference in his final season with the Tar Heels.
"I was at a younger age (with VSD) and not aware of the situation," Seager said. "I had to go to a cardiologist every year ... I knew I had a scar." Seager said he had multiple tests when he signed with the Mariners but said he has a "clean bill of health" now. The operation didn't deter Witherspoon, who participated in the Jackson Area Wide Soccer league at age six. "I had to wear a heart monitor," Witherspoon said. "But it got in the way." The monitor may be the only thing getting in Witherspoon's way considering he has tried out for football at Rose Hill Middle School, where he will enter the seventh grade this fall.
"Me and my neighbor, Braiden Stewart, go out and play football and basketball in his front yard and driveway," Witherspoon said. "I'm also a bat boy for our church league softball team, East Union Baptist Church." He also became a collector of sports memorabilia after meeting Seager. "Kyle autographed a baseball, two pictures and an autographed jersey," Witherspoon said. "I have the jersey hanging in my closet and I'm going to get it framed."
The jerseys the Generals wore during the game were auctioned, and William submitted the winning bid with a little assistance from Generals general manager Tom Hanson. The proceeds going to the American Heart Association. "Kyle told the (Generals) general manager Mr. Tom (Hanson), and he added 50 dollars to our bid so I could get it," Witherspoon said. Seager left Jackson for Tacoma on June 23 after playing in the Southern League All-Star game. He was hitting .312 with 83 hits and 37 RBIs and hasn't skipped a beat with the Rainiers, where he is hitting .480 in 11 games. With Seager off to Tacoma, Witherspoon heads for Lebonheur Hospital in Memphis for a heart catheterization Friday. "I'm glad (Seager) is one step closer to the Major Leagues," Witherspoon said. "And me, I feel fine."
Story obtained here.
|
|
CHD Legislation
|  "Darth Vader"Goes to Washington Earlier in the year, we published a story about Max, the little boy who played Darth Vader in the popular Volkswagen Super Bowl commercial and his battle with CHD. This story was published this week about his journey to speak in Washington: From Colorado's 9News.com: If you've thought to yourself that Congress and the president are acting childish, at least one child says that's a bit of an insult to children. Particularly Max Page - the boy who played Darth Vader in the Volkswagen SuperBowl ad. He went to Washington to fight for children's access to healthcare. While lawmakers scramble to reach a debt-ceiling deal, 6-year-old Max is advocating for no cuts to Medicaid and other health programs. "Can you tell the president this? If the budget gets cut, he needs to realize his daughters might need it," Max told Sen. Chuck Grassley (R-Iowa) on Wednesday. Max was born with a congenital heart defect and is now on his third pacemaker. For the complete story, follow this link. |
Upcoming Events |
IMH National Family Conference September 24 - 25, 2011 Visit our website for details and to register! |
|
National Keep the Beat 2011 Slideshow
| 
Watch the moving slideshow put together with pictures from the 2011 National Keep the Beat Walk. It will definitely get you excited for the next one!
Click here to watch both the long and short versions.
|
|
August CHD Birthdays
| |
  
Kaleb Lahr David Forrest Navarre
August 1, 2010 August 2, 2006 August 3, 2010  
Joshua Heygood Tyson Robert Shreier Luke Heplin
August 7, 2006 August 10, 2006 August 11, 2003
  
Justin Venissat Cole Klein Benjamin
August 13, 2004 August 19, 2002 August 19, 2009
 
Carl (CJ) DeJohn, III Elia Rose Harvey Jillian Paige LaLonde
August 19, 2009 August 21, 2005 August 22, 2007
(not pictured)
  
Nolan Beckert Genevieve Norton Shelby Gay
August 26, 2007 August 26, 2008 August 27, 2008
(pictured with her twin brother Henry)   Keeghan MacLauchan TJ Smith
August 30, 2010 August 2002
Is your child born in September? 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 click here 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.
.
|
|
|
|
|
|
