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Chapter Spotlight: Southern Minnesota
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From the Southern Minnesota Chapter President: Angela Heidelberger |
On January 1, 2010 my daughter Hazel was born. Less than 24 hours later she was flown to the closest Children's Hospital where she was diagnosed with a CHD, Hypoplastic Left Heart Syndrome. After undergoing two open heart surgeries, she was unable to come off ECMO support and died in my arms on January 14th.
I had never heard of a congenital heart defect before Hazel, but in the weeks following her death I knew I was called to be a heart mom. I wanted to do something to help other families like mine but didn't know what. When I heard about It's My Heart I was very interested and inquired about starting a chapter. Thankfully, I knew two awesome people willing to take on the roles of officers that were eager to start this journey with me. The Southern Minnesota Chapter became official with the state in April 2010.
Our chapter has grown very quickly over the past few months which is a testament to how real the statistic of 1 in 100 really is. Although the name of our chapter is region specific, we are currently doing our best to serve the needs of our entire state.
We have three major Children's Hospitals within two hours or so of us. We are currently serving two of the three with our Comfort Bags, at a rate of 50 bags per month. We hope to get the final hospital on board soon which will add another 40 bags per month.
Before our chapter even became official, we began planning our first awareness walk. This was ambitious, but the success of it was more than I could have imagined thanks to our volunteers and heart families. On September 11th over 220 people came together to show their support for IMH; it was a day I will never forget. We are currently planning a 5K Walk/Run for May 2011 in a different Minnesota city that promises to be just as successful.
Serving as large of an area as we do has been challenging, but we are doing our best to face this head on. We hold monthly support group meetings that we are working to develop based on the feedback of our families. We try and alternate these meetings with group activities located in various places so we can include more people. We had a picnic this past August in the Twin Cities, are planning a Christmas event for December, and we are excited to sponsor a day of bowling for all of our families in February to celebrate CHD Awareness Week.
In the future our chapter hopes to expand to serving more hospitals with our Comfort Bags. We are building our officer and volunteer base so we can offer more services for our families. We are excited about holding two awareness walks each year. We hope to work closer with local hospitals to implement pulse ox screening and educate them on CHD. We also plan to make a sizable donation each year to research as this is close to all of our hearts.
The Southern Minnesota Chapter has grown quickly and we are working hard to make sure it is built on a foundation that will sustain us. We look forward to continuing to build support within our communities, and most importantly, serve our heart families to the best of our ability. I think our chapter vision statement says best what we are all about: To Heal All Broken Hearts.
 Southern Minnesota Officers
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| Mom spreads the word on heart defects By Ethan Forman October 20, 2010 From The Salem News
DANVERS - Six months into their first pregnancy, Ron and Isabelle Ouimette of Danvers learned through a routine ultrasound at Beverly Hospital that their unborn son had a rare congenital heart defect. It was February 2008 when doctors sent the family to Tufts Medical Center in Boston for an echocardiogram that confirmed the unborn baby had an enlarged right heart and two bad heart valves. André© was born May 1, 2008, and since then he has been in and out of several Boston-area hospitals. Otherwise, he appears to be like any other healthy, chubby-cheeked 2-year-old. "If you look at him, you wouldn't know there was a problem," Isabelle Ouimette said. As the family dealt with André©'s condition, however, they found there were few places they could turn to for support. "You just have to learn how to go about it a day at a time, because every day can be a different outcome," Ouimette said. Then Ouimette became actively involved in It's My Heart Inc., a Houston-based nonprofit that provides support to families dealing with heart defects. Ouimette is now president of the Boston chapter, which has four families, though Ouimette knows there are more like hers out there. To reach out to others, she joined the Danvers Kiwanis in September. To raise further awareness, Ouimette is planning a crafts fair and bake sale at the Onion Town Grill, 175 Water St., Danvers. Proceeds will go to support families who wind up in pediatric intensive care units. "André© was in the ICU four times in three months," Ouimette said. André© has had numerous hospital visits, tests and procedures, beginning with a procedure to stretch his pulmonary valve when he was just 6 weeks old. At 3 months old, he had his first open heart surgery. His parents have learned there is no easy fix for his problems. "You are tested emotionally more than physically," said Ouimette, 40, who used to work for an online marketer, but who is at home full time now to care for her son. This Saturday, the Ouimettes hope to share what they have learned dealing with André©'s condition with others, while meeting other families affected by heart defects. Live entertainment will be provided by recording artist Donnie Wilson of Rhode Island. "The reason I'm doing 'It's My Heart' is there is not enough awareness about this," Ouimette said. http://www.salemnews.com/local/x693283031/Mom-spreads-the-word-on-heart-defects
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| Heart Journey | This is the Heart Journey of Adriann, as told by her mother Tiffanie
My daughter Adriann was born February 9, 2010. She is the best thing that has ever happened to us. Adriann was born at 1:01 p.m. after an uncomplicated labor and delivery. She was given a clean bill of health from the pediatrician. The next morning my mom, Adriann's grandmother, mentioned to the nurse that she still looked "blue". The nurse proceeded to place the oxygen saturation monitor on Adriann's foot and the number that I read is forever engraved in my brain. The monitor read 64. I knew this was not right, it could not be. The nurse took Adriann to the nursery and asked me to stay behind. I was so worried. My husband, Michael, had been deployed to Haiti two days before I gave birth. I wanted to wait until I found out something definite before I had to call and upset him. My mom, who had gone with the nurse, entered the room and told me that they thought she had a congenital heart defect. Then the pediatrician came in and told me that the hospital did not have the proper equipment to fully diagnose her condition. We were transferred from the military hospital to a hospital an hour away. Once we got there the doctors told us that there was definitely a problem. By that time I had already called my husband and he was being put on a plane that night to return to the U.S. They then told me that they were transferring Adriann to New Orleans Children's Hospital. New Orleans Children's Hospital's transport team came and got Adriann a couple of hours later. We arrived in New Orleans at 2:00 a.m. They began her treatment as soon as she arrived. The next morning they told me Adriann's official diagnoses, Transposition of the Great Arteries. They then explained to me that she would have a balloon septostomy to help her blood oxygenation and also to check her anatomy to see if she would be able to have a procedure called an Arterial Switch. After her heart catheterization, I was told that she was not a candidate for then arterial switch and that she would need a B-T shunt. The doctors said that if she was stable enough that they would try to send her home before her surgery for the shunt. The day that they planned to discharge Adriann, she took a turn for worse. Adriann was prepared for emergency surgery. Her surgery was successful! She was then taken to the CICU for recovery. After failing extubation twice and two very long months in the hospital, we were finally discharged from the hospital in April of 2010. Having a child who is such a fighter inspires me to be strong person. Our time at New Orleans Children's Hospital taught us patience and how to have faith in doctors and nurses. Our daughter Adriann is a happy, normal eight month old. She is awaiting a Rastelli procedure to be done around a year of age.
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CHD in the News
| New technique eases trauma for young heart patients
By Janet St. JamesOctober 19, 2010WFAA.com: Dallas/Ft. WorthDALLAS - Each year, about 36 million children are born with a heart defect. Many will need at least one open heart surgery to make repairs. Now, Children's Medical Center Dallas is leading the way with a newly-approved surgical technique that could help some of the youngest patients heal their hearts.Children's was the first in Texas to attempt surgery to replace a faulty heart valve without cutting open the patient. Until a few months ago, open heart surgery was the only option.A kiss and a high-five sends 10-year-old Tristan Wolf off to what could have been a painful and traumatic heart surgery. Tristan was born with a congenital defect that requires a new heart valve. He has already had two open heart surgeries. But not this time.A replacement heart valve will be threaded up a vein in Tristan's leg, just like a stent is placed for an adult's angioplasty. There is no major incision. Open heart surgery used to be the only way to replace a child's heart valve. Patients were in the intensive care unit for a week, then recovered at home another six weeks. "This way, there's none of that," explained pediatric interventional cardiologist Dr. Alan Nugent. "Bruise and Band-Aid on the leg; you're discharged in a day."Dr. Nugent calls the less-invasive procedure a big breakthrough for pediatric heart surgery in the United States. Children's is part of a national study that will follow the long-term success of patients who try it. For Tristan's parents, the upsides are clear: Their son will be playing with his brothers and sisters within 24 hours.Because this is not considered a major surgery, it costs a lot less, too. Unfortunately for Tristan, he could be back in school by Friday.http://www.wfaa.com/news/health/New-technique-eases-trauma-for-young-heart-patients-105299118.html
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| CHD in the Media | Brandy Dances to New Tune for Girl Who Needs Heart October 29, 2010 From ABC News
LOS ANGELES (Reuters) - She is wowing fans on the reality TV contest "Dancing With the Stars" but behind the scenes this week, singer/actress Brandy has been in a more important competition. She is racing against time to help save the life of a teenager who needs a heart transplant.Brandy, who gained fame as chart topping R&B singer and actress on the TV show "Moesha," has been raising awareness and money for 16-year-old Jessica Harris, who suffers from a congenital heart defect. Known as hypoplastic left heart syndrome, the condition can be fatal."I just want to do whatever I can to get her story out there in the public," Brandy told Reuters. "You hear a lot of stories like these, but this one just connected to me."Harris lives McComb, Mississippi, where Brandy Norwood was raised before she went to Hollywood and became the big star known simply by her first name.Brandy's family told her of a story the local paper wrote about Harris needing a heart transplant that, on average, costs $150,000. But Harris is currently uncovered by insurance because the policy through her father's new job doesn't allow dependents with pre-existing conditions until July 2011. Harris has been told by doctors she may not live that long.The story in the McComb Enterprise-Journal this month told readers how Harris dearly wanted to meet Brandy, who recently found success in reality television on shows like "Brandy & Ray J: A Family Business" and currently "Dancing With the Stars."When Brandy got wind of the tale, she talked with Harris and decided to fly her and her family to Hollywood where the teenager attended a taping of "Dancing With the Stars." Harris also had dinner and birthday cake at home with the Brandy and her family. Harris turns 17 years-old on November 3."When I met her, she felt like a younger sister," Brandy said of Harris. At dinner, "she got a chance to see me as a person and not what she thought of me" as a celebrity.For the complete story, click here.
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Upcoming Events
| Northern New Jersey Chapter Breakfast with Santa, Kids Tricky Tray, and 50/50 Sunday, December 5, 2010 The Brownstone, Paterson, NJ For Info, click here.
Houston Chapter: It's My Heart Blood Drive Thursday, December 9, 2010 1775 St. James Place, Suite 130 Houston, TX 77056 Info: To schedule an appointment, visit www.giveblood.org and login to Digital Donor. Enter sponsor code U925 or contact It's My Heart, Inc. at (713) 334-4244
Fresno Chapter CHD Awareness Run/Walk Saturday, February 12, 2011 Woodward Park, Fresno, CA Register online here.
Houston Chapter: Keep the Beat It's My Heart Annual CHD Awareness Walk Saturday, February 19, 2011 Sam Houston Park, Houston, Texas Register online here.
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CHD Birthdays
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Kyle Knobloch Kyle Mabe
November 2, 1999 November 2, 1997

Trisha Culver Peyton Grace Crymes
November 7, 1994 November 17, 2008

Amelia Olson
November 24, 2008
Is your child born in December? Please send us your child's birthday and picture so we can all celebrate your child's birth with you!
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! E-mail to
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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 go online at www.itsmyheart.org and fill out our Family Matching form.
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Donations
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One Time Donations from:
Bob and Kim Hagemann in honor of Halley Bates, our wonderful daughter
Jadai Sells to support the cause
Samantha Moore to support the cause
Jennifer Garcia- Price in honor of my beautiful sister-in-law Tara Garcia!
We love you!
Donations from the It's My Heart Causes section of Facebook given by: Susan Lorber Buckler Traci Meyers McCann Tiffanie Graham Quatraro Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way. All donations are tax deductible. Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc.
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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:
Fresno, CaliforniaSouth Florida Northern New Jersey Cleveland, Ohio Columbus, Ohio Portland, Oregon
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