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Monthly Spotlight: A CHD Research Study
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Below is a letter from Tamara Moyer, a graduate student from California State University in Sacramento. She is currently conducting research about how pictures and words can describe communities, will be spotlighting the CHD community, and needs your help!
To It's My Heart:
I am currently working on my thesis in Visual Communication, and in thinking about what I wanted to focus on, I knew I wanted to do something that was close to my heart. My nephew Zechariah, was born with a CHD and, It's My Heart has been an important part of helping my family. It's My Heart has given my family invaluable tools, resources, and support. As a result, I want to give something back to not only my family but to the CHD community. The CHD community is diverse, however, the common thread is that everyone has experienced CHD.
You have a unique opportunity to share your story, through words and pictures. Your words and your pictures may help others who also effected by congenital heart disease. Your association with It's My Heart allows you to be a part of a unique community of people who also have experiences with congenital heart disease. The goal of this project is to show with words and pictures what the congenital heart community looks like.
You will be asked to fill out a brief questionnaire about your experience with congenital heart disease. After that, an in person interview will be conducted in which you will be photographed and asked some follow-up questions. The interviews and photography will take place at the It's My Heart walk in Seattle, WA (July 23, 2011) and the It's My Heart conference in Houston, TX (September 24-25, 2011).
If you are able to be at either venue and are interested in participating in this project or you have any questions, please contact:
Tamara Moyer
tamaramoyer@gmail.com
(916) 803-3215
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CHD in the News
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Life-saver sows 'seeds of a better future between Israelis and Palestinians'
From The Globe and Mail
Wednesday, June 1, 2011
By Patrick Martin
Holon, Israel: Suad Ghouti was afraid to tell her neighbours. Her sixth child, nine-month-old Abdel-Rahman, had a serious heart defect, and the family's specialist in Gaza told her the only place the boy could receive the surgery he needed was in Israel.
In the religiously conservative and militant city of Rafah, Israel is regarded as the enemy. It's where many of Hamas's senior leaders were born and raised, and where even more extreme Salafi-Jihadists now challenge the Hamas leadership. For many there, putting your son's life in the hands of "the Jews" was highly risky and politically inappropriate.
Even the Ghoutis, while insisting they are politically independent, have a Hamas flag hanging in their sitting room, and a sticker of late Hamas leader Sheik Ahmed Yassin,is stuck to the door of one of their children's bedrooms. But their doctor had assured them that an Israeli non-governmental organization called Save a Child's Heart would take good care of them.
SACH is a remarkable humanitarian organization that has performed heart surgeries on more than 2,600 children from around the region, and from some 37 countries or territories altogether - all at no cost to the patients or their families. Of the total number treated, 48 per cent of the children are Palestinian.
Last month, the 15 year-old organization was recommended for special consultative status by the United Nations Economic and Social Council, a major acknowledgment of the group's hard-earned credibility. The status enables them to participate in various UN bodies and, more important to SACH, gives the group international stature - it's no longer just a Jewish charity.
In the Palestinian territories and in neighbouring Arab countries, SACH operates on the ground through a Christian partner organization, Shevet Achim, that can work in places Israelis aren't permitted and can help overcome the fear and distrust that many patient families might have.
That is how Mrs. Ghouti and her son find themselves in Edith Wolfson Medical Centre in this working-class community south of Tel Aviv, preparing for the baby's surgery.
Brought to the Erez checkpoint inside Gaza, the Ghoutis meet up with several other Palestinian children and parents also heading to Wolfson. Their paperwork all in order, the Ghoutis and other families pass through the crossing surprisingly smoothly - first through Hamas's out-going checkpoint and then through the labyrinthine Israeli controls, where every package is meticulously searched, and Mrs. Ghouti and her baby go through a full body scan.
On the way to Holon, the Ghoutis pass by Sderot, the Israeli town targeted by of hundreds of rockets fired from Gaza - and where Mrs. Ghouti's grandparents and in-laws had lived before fleeing to Gaza during the fighting of 1948.
Outside the third-floor office of Akiva Tamir, head of pediatric cardiology, sit several Palestinian families. Some will have their children evaluated and be sent home to await surgery. Others, such as Abdel-Rahman, will have their operations scheduled more quickly and stay until then. Many of those waiting say it's their first time inside Israel. They seem comfortable inside the hospital, but say they worry about being outside in the street. Fatma Sarsour, a part-time staff member from an Arab community inside Israel, interprets for the families. She helps deliver the bad news to one family of what their child's evaluative tests have shown. Abdel-Rahman suffers from a ventricular septal defect, a hole in the wall between the right and left ventricles of the heart. It's the most common congenital heart defect treated here. Click here to read the story in its entirety.
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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
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| 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. |
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Heart Journey
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Kaylee's Heart Journey, as told by her mother, Katie.
I'll never forget the day I found out I was pregnant-November 14th, 2009. We were so excited! The possibility of having a child with a chronic medical condition never even crossed our minds. Little did we know that one year from that day, November 14, 2010, our little 3 month old would be fighting for her life in the pediatric intensive care unit after having Open Heart Surgery just 4 days prior.
At my 20 week ultrasound, we found out we would be having a little girl. How excited we were! We couldn't wait to tell our entire family. The doctor went over the ultrasound with us-everything looked good, except for a small choroid plexus cyst in our baby's brain. He said that this sometimes could be a sign of other abnormalities, but the majority of the time they go away and have no negative effect on the fetus. The doctor looked over our baby's other organs very carefully, and didn't see anything alarming. He even showed us the heart and its' four chambers. I was so relieved! The doctor wanted me to come back in 3 weeks to make sure the choroid plexus cyst resolved itself.
Three weeks later I was back for another ultrasound. He looked over the brain and said everything looked great! I was so happy and ready to go home and relax. But then he took a second look at her heart. He noticed a VSD (ventricular septal defect), and also noticed that her two main arteries were parallel to one another (which is not how they should be). I was referred to a pediatric cardiologist for a fetal echocardiogram.
After nearly four excruciating hours, the pediatric cardiologist came back with a diagnosis: isolated ventricular inversion with large ventricular septal defect. I will NEVER forget hearing him say, "Fetus has a complex congenital heart defect." The pain was unimaginable. They took us in a conference room where the cardiologist drew a picture of our daughter's heart. He said she would need either 1 or 2 open-heart surgeries after birth. I was an emotional wreck.
I grieved the majority remainder of my pregnancy. I tried to not let myself get too attached to my unborn daughter. What if she didn't make it? I was scared to decorate her nursery. I didn't want to have a baby shower. I could barely function. While family and friends were supportive, no one understood what I was going through.
I was fortunate enough to find some wonderful "heart mommy" friends on facebook. These women were there for me the remaining duration of my pregnancy and thereafter. They shared their stories with me. Showed me pictures of their miracle heart babies. They gave me hope.
Fast forward a couple months-my due date came and went. I was induced and after 2 days in labor finally had a c-section. July 24, 2009 my little princess was born. I had emotionally prepared myself in case I wasn't able to hold her after she was born. I'm glad I did, because she was rushed to the NICU after birth due to respiratory distress. I would hold her a few days later.
We spent the first 6 weeks of Kaylee's life in the hospital. At 6 days old she had her first heart catheterization, where they performed an atrial septostomy. 38 days later she was discharged home. Kaylee was on NG tube feeds that we had to give her every 3 hours around the clock. She was on a cocktail of medications several times a day. Kaylee was in heart failure and had no energy. She couldn't eat by mouth because she just didn't have the energy. She would breathe so fast and when I held her I could feel her heart pounding. It was so scary at times.
On November 10, 2009, Kaylee had her Open Heart Surgery at Rainbow Babies & Children's Hospital in Cleveland, Ohio. The surgeon who saved my little girl's life was Dr. Ross Ungerleider.
Surgery itself went well. Dr. Ungerleider performed the Senning, VSD closure and PDA ligation. The next couple of weeks were the hardest and darkest times of my life. Kaylee had pneumonia, a blood infection, yeast infection, collapsed lung, suffered a stroke and seizures, and coded. She was intubated for 2 weeks. Kaylee fought so hard for her life. She beat so many odds. God has blessed us with a true miracle, and I am forever thankful.
We just celebrated Kaylee's 1st birthday, and what a celebration it was! The past year has not been easy. I am a stronger person because of my experiences with Kaylee. Kaylee's heart is considered "repaired" by her surgeon. She has to see the cardiologist every couple months. One day she may need a pacemaker. Thanks to recent medical advances and technology, many babies born with congenital heart defects now have the opportunity to live full, productive lives. And that is exactly what Kaylee will do!
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CHD in the Media
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70's heart throb, voice of 'Beast' talks about heart problems
CLEVELAND - Robby Benson has had a long career in Hollywood, best known for his role in Ice Castles and as the voice of Beast in Disney's Beauty and the Beast.
Not visible on screen is his battle with a congenital heart defect, responsible for four open heart surgeries, the last one taking place at the Cleveland Clinic.
According to the Cleveland Clinic, the most recent surgery is called the reverse Ross Procedure. Patients with aortic valve disease can have their aortic valve replaced with their own pulmonary valve. If this valve fails, Dr. Gosta Pettersson can now reverse this operation by repairing the failed valve and re-implanting it back where it came from in the pulmonary position.
Just two days shy of his surgery's one-year anniversary, Benson was the keynote speaker at the 2011 Patient Experience Summit about being a Cleveland Clinic patient.
Clinic spokesmen say Benson enjoys mentoring cardiac surgery patients - helping them through surgery and recovery with humor. "He is living proof of how innovative medical expertise can be provided alongside empathic care," a hospital spokesman said.
You can also read more about Robby Benson and his journey with CHD at www.robbybenson.com.
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CHD Legislation
|  Christie signs legislation mandating that all newborns in New Jersey be tested for congenital heart disease From the NJHearald.com DENVILLE -- Gov. Chris Christie Thursday signed legislation mandating that all newborns in New Jersey be tested for congenital heart disease. The signing ceremony occurred at St. Clare's Hospital in Denville, where Christie was questioned by the press about his use of a state police helicopter. The legislation requires that pulse oximetry -- a noninvasive and painless test -- be administered at least 24 hours after a child's birth. Proponents call it a common sense way to potentially save lives, and note that some hospitals already require it. The state Senate passed the measure 35-0 on Thursday, just weeks after the Assembly gave its approval by a 78-0 vote. Dr. Richard Rothenberg, chairman of obstetrics and gynecology at St. Clare's, who has worked in the OB-GYN field for 25 years, said, "The key to this legislation is to help us pick up congenital heart defects so they are identified, evaluated and treated." An ultrasound 20 weeks into a pregnancy is routinely done to identify congenital heart abnormalities, but some may still not be seen, he said. The pulse oximetry test is an "early warning system" that can alert doctors that a baby is not getting oxygen properly, he said. "I think it is a wonderful thing that they are taking this action," he said, adding that the test would not be costly. "It is a win-win," he said. "It will help pick up any problems and save lives." Experts say roughly one in 100 children are born with structural problems in the heart, most of which are not diagnosed before birth. They can impact blood flow through the heart, lungs, and brain. While some types of CHD cause few if any health problems for infants, others bring a significant risk of health problems or death if not diagnosed soon after birth. The low-cost pulse oximetry test -- commonly known as "pulse ox" -- measures the percent of oxygen in the blood and whether a baby's heart and lungs are healthy. The pulse ox is placed on the baby's foot by a sticky strip, similar to a Band-Aid, and takes just a few minutes to perform. A low pulse ox reading would likely prompt medical professionals to seek more testing for the infant, such as a heart ultrasound or echocardiogram. While the pulse oximetry test may not identify all CHD, proponents call it a "significant and sensible step" toward early detection of potential problems. To see the article in its entirety, click here. |
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IMH Webinar for June
|  This month's webinar is titled, "The role of parents as advocates for their children in the medical world." The webinar will be on Thursday, June 16, 2001 from 7:30-8:30, CDT. A webinar is a live seminar conducted over the internet in which participants can see the presenter's PowerPoint slides and can submit questions via chat. Simply, register to participate here and be ready to participate on June 16th! |
Upcoming Events | |
Keep the Beat It's My Heart 1st Annual Boston CHD Awareness Walk Endicott Park, Danvers, MA Saturday, July 3, 2011 
2nd Annual Greater Seattle Chapter CHD Awareness Walk Warren G. Magnuson Park, Seattle, Washington Saturday, July 23, 2011 
IMH National Family Conference September 24 - 25, 2011 More details coming soon. Stay tuned! |
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Shadow Buddies | |
Check out this great website that sells huggable "buddies" for kids with various chronic conditions. They have one with an incision on the chest and a mended red heart for CHD kids.
This is what their website has to say: One of the most difficult things about being a child with a chronic condition is the isolation of being different. The loss of ability to function as a normal child - to run and play and skip and roughhouse - robs these children of normal lives and true friends. Family most certainly helps, but it's friends that share the fears and frustrations and confidences. Friends just like them. Shadow Buddies have been designed to be both "The friend like me" and a teaching tool. Working with medical professionals, Shadow Buddieshave been designed as warm, huggable Buddies for boys and girls that take the place of friends who cannot be around when needed most. Shadow Buddiesare also condition specific, demonstrating anatomically the physical results of treating a particular condition. Shadow Buddies may be used as a psychological bridge to span the gap between treatment and awareness. When seen first on their "Buddy", a scar, catheter or even a stoma has far less impact. A teaching tool as well, Shadow Buddiesare useful as a means of demonstrating basic care. Shadow Buddieshelp children, their siblings and family cope with their condition. This in turn makes it easier for health professionals to provide appropriate, successful treatment. Go to the Shaddow Buddies website for more info. |
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June CHD Birthdays
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Alex Jernigan Hannah Theiss
June 29, 1999 June 8, 2007
 
Andrew Lorena Sawyer Erik Williams
June 10, 2009 June 1, 2010-June 3, 2010
Is your child born in July? 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!
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IMH Newsletter Poll |  Thank you so much for all of your feedback from the It's My Heart Newsletter poll that was sent out by e-mail last month. We appreciate all of your wonderful input! Be looking for some added information and changes to come in the next few months. Also, we've found that the newsletter opens best in Firefox. If you have had trouble opening it, try that browser. |
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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. |
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It's My Heart Chapters
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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.
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