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Chapter Spotlight: Metro Philly
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From the President of the Metro Philly Chapter:
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The Metro Philly Chapter of It's My Heart began in honor of my strong son, Zachary. When Zachary was in the hospital as a newborn, I was thinking of ways that I could help the other families in the hospital. I talked to my husband about it, and we began researching starting a non-profit. I came across the It's My Heart page. After looking at every aspect of the page to find out all the particulars of the organization, I contacted National about setting up a chapter. I was getting everything in order to start things moving when my son had to be re-hospitalized. While he was in the hospital, the chapter had to take a backseat as his medical condition was on its own roller coaster. Zachary earned his angel wings in December of 2008. After his passing, It's My Heart became my time that I spend with Zachary. Since then, we have made huge steps in growing our chapter. The Metro Philly Chapter has 3 children's hospitals within 45 minutes, one of these hospitals being Children's Hospital of Philadelphia. CHOP is a big hospital where a lot of procedures and research take place. We currently are providing comfort bags to the hospital. We are working towards providing other necessities for the families. We also have taken a stand to donating a certain percentage of all our fundraisers to research. There are a lot of heart families between Philadelphia, Southern New Jersey and Delaware. Our goal is to reach out to as many as we can to assist them in any way possible. We all know what it is like to be that parent, sitting in that hospital room praying that your child is going to live a normal life. An example of ways that we have helped our heart families is when our chapter provided Christmas for one of our heart children who is awaiting a new heart and lungs. Not only did Santa Clause bring Riley and his brother gifts, he brought them in style. Two fire departments and two ambulances brought Santa and the gifts to the O'Brien family. This evening was covered by two different news stations. Our chapter is currently planning our largest fundraiser of the year. The 2nd Annual Zach's Tracks for the Heart CHD Awareness walk will be held on September 25, 2010 at the Philadelphia Zoo. Other events that we have held and are planning to hold this year are, Social for Hearts that was held on February 27, 2010 and we are planning a Vendor Fair for November of 2010. As a chapter, we have put together a very successful first walk. We have reached out to many heart families and our biggest accomplishment was seeing the smile on the O'Brien's faces when for just one night, they could truly not worry about awaiting organs and see the smiles on their children's faces. I was not able to give my son his first Christmas since he was only a little over 9 months old when he became an angel so seeing Riley's face let our chapter know that we pulled together and accomplished something huge in the eyes of a child. In the future, our chapter has many goals. We are always looking to expand our volunteer base. Our volunteers are a large part of how we are able to accomplish our plans. Our walk is always high up on our goal list and we spread so much awareness planning and during the walk. This is also where we raise the most money which means more money to put towards research. Thirdly, our goals always aim to assist heart families in the area. The Metro Philly Chapter has grown over the last year and a half and we have high expectations that it will continue to grow. We are aiming to be one of the most recognized non-profit organizations for Congenital Heart Defects in the Metro Philly area.  Members of the Metro Philly Chapter
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IMH Highlights
| It's My Heart received a certificate of honor from the Ronald McDonald House for donating a large number of pop tabs. Here is some information about this program so you can be involved in your area:
Why do they collect pop tabs? Ronald McDonald Houses collect pop tabs instead of entire aluminum cans because the tabs are pure high-quality aluminum, unlike cans, which consist of aluminum and other alloys. Tabs are also easier to store than whole cans. Where can they be donated? If your local Ronald McDonald House participates in the program, it's likely cardboard collection containers in the shape of a house have been distributed to schools, community and civic groups and other organizations in your area. Collect pop tabs to drop off at one of these areas, or contact your local House about getting a collection container that you can be responsible for filling through one of your own groups.
The Ronald McDonald House helps out families who have hospitalized children in such a tremendous way. This is a great way to give back to them!
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National Officers & Official Volunteers
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Corrie Stassen Executive Director
Katy Wolff Vice President
Lauren Simpson Secretary
Alexis Durham Treasurer
Anissa Speight Medical Advisory Board Coordinator
Laurie Hutchings Family Matching Director
Ann Martin Literature Distribution
Ashley Auzenne Project Development
Gail Brasser Project Seamstress
Pamela Floyd Conference Chair
Allison Johnston Newsletter Co-Editor
Amy McCathran Newsletter Co-Editor
Heather Vinson Financial Director
Kate Shamszad Child Life Specialist
Jill Vantine Transition Coordinator
Cailey Fitzgerald We Got Heart Chair
Tiffany Galligan Marketing
Ty McCathran Legislative Liaison
Robyn Steinberg Web Administrator
Tim Hutchings Web Admin Assistant & Graphics
Kim Shadek Chapter Liaison
Pamela Camit Chapter Liaison
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| Heart Journey | This is the Heart Journey of Phoebe Rolando, as told by her mother, Julia Rolando.

We are Julia and Anthony Rolando- we live outside of Melbourne, Australia with our 17 month old daughter, Phoebe. I am an American and moved here 3 years ago from New York to marry my husband. Our beautiful daughter was born in February of last year with Hypoplastic Left Heart Syndrome, multiple VSD's and narrowing of the Pulmonary Artery. We were diagnosed at 20 weeks prenatally, when at our regularly scheduled ultrasound our technician first discovered a difference in the size of the right and left sides of the heart.
We were quickly referred to a pediatric heart specialist, Dr. Lance Fong, by our Obstetrician. Dr. Fong immediately brought us in for a fetal ultrasound, and confirmed that it appeared at that time our daughter's heart defect would be treatable with surgery after birth, most likely between one to three months of age. Special arrangements had to be made for us to give birth at a different hospital now with a new Obstetrician, in order to be prepared for what may follow after her birth. A special team of doctors and medical staff were present during her birth, and Dr. Fong came the following day to do an ECG and ECHO of Phoebe's heart. It was at that scan that Dr. Fong discovered her heart defect was far more serious than originally thought, and a more complicated surgery would be required immediately. She was transferred to The Royal Children's Hospital in Melbourne at day 2 of life and was put on the waiting list for surgery there. The news of Phoebe's condition and impending surgery really hit us hard, as we had just escaped the horrible bushfires that had devasted our town of Kinglake, and we were still dealing with this emotionally. At 5 days old, Phoebe underwent Stage 1 of the Norwood's procedure. She did not cope well after surgery, and had to go immediately onto ECMO for 5 days. She was in the PICU for 3 weeks, then transferred onto the Heart Ward at the Childrens Hospital, where we stayed and prepared for Stage 2 of the procedure which was to be at 3 months of age. There were many ups and downs for us during that time, and Phoebe struggled throughout this period. She suffered many setbacks due to infections, aspirations and feeding issues. Phoebe was never strong enough to drink from a bottle or breastfeed, so she received all nutrition in the form of a feeding tube. Due to this we experienced several trips back and forth to the PICU. It was decided that her surgery would be moved forward as soon as her heart was able to handle the extensive repair that was needed. Phoebe's second surgery was very complicated, and took about 10 hours to complete. She was slow to recover and finally made it back to the Heart Ward after about a week in PICU. It was then another 3 weeks of weaning of her medications and working on bolus feeding through the tube before we were able to come home for the first time as a family. Phoebe came home from the Children's Hospital with her feeding tube and we fed this way until we began a weaning program through the hospital at 10 months of age. After much practice she has now learned to drink from a cup and to feed herself, which is very exciting for us as parents to see. Phoebe's experience in hospital inspired us to design and patent a specialised medical garment, the fly BABY Healing Suit. The Healing Suit allows hospitalised babies and children to be dressed easily even with the presence of chest drains, monitors, iv drips, etc and does not require removal for X-Ray. The fly BABY Healing Suits are now in use at the Royal Children's Hospital Heart Ward. |
CHD in the Media
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Walk on Water, a book by Michael Rulhman follows acclaimed pediatric heart surgeon, Roger Mee of the Cleveland Clinic, and his department and staff through several CHD cases. Ruhlman spent several months observing Mee in all facets of his daily work, from the bedside of his patients into the O.R. He delves into just what makes a pediatric heart surgeon great and what distinguishes the pediatric surgeon from an adult heart surgeon. As a parent of a CHD patient, I took great interest in going behind the scenes in the hospital and understanding the point of view of not only the surgeon but also of the residents, the anesthesiologist's staff, and the nurses. There is also detailed history of CHD woven into the book which helps explain just how far pediatric heart surgery has come in a short amount of time. I contacted the author, Mr. Ruhlman recently by e-mail and asked him a few questions about his book and his thoughts on CHD after his work on this book. Q: Your book stresses the extreme importance of choosing the correct cardiac care. You said in Walk on Water, "This is not the time to be timid; it is probably one of the most, if not the most, important decisions parents will be making in their child's life." What is the most important thing a parent should look for when choosing a cardiologist/cardiac surgeon? A: A number of things. First, how many surgeries of this kind has he personally done, and how many does the hospital perform annually? Volume almost always translates to higher success rates. What is the typical recovery time for this repair at this hospital (compare it with that of other hospitals)? The surgeon should be straightforward and honest, not evasive. Q: What impressed you most about Dr. Mee? A: How routine he made everything. He always did the same thing every time. He was also uncommonly humane, thoughtful, smart, and an excellent physical craftsman. Q: What surprised you most about the world of congenital heart disease? A: How variable the quality of care is. Sometimes it seemed as if it were designed to favor the hospital above the patient. Q: In your opinion, how can groups like It's My Heart best serve the CHD community? A: By sharing information and working to get accurate information from the various hospitals and spreading it. This is where the consumer really is the only one who can change the system. The US should really have 5 centers nationally that perform pediatric heart surgery [which] would assure all high volume places and the best care for patients. Q: What limitations/setbacks do you think most hinder CHD patients in regards to hospital care? A: Hospitals that withhold information, intimidate parents, and use parents' fear and lack of knowledge to get their business.
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CHD in the News
| Brenham teen receives triple transplant in Houston By TODD ACKERMAN Houston Chronicle July 14, 2010
Taylor Sherrouse will leave Texas Children's Hospital no later than early next week able to do what she hasn't for a long time: eat heartily, breathe on her own and walk without a struggle. Sherrouse, a 17-year-old Brenham resident with cystic fibrosis, has what her doctors described Wednesday as "a new lease on life" following a rare triple-organ transplant in late June. During a 13-hour operation, they replaced her heart, lungs and liver - only the third time in the past decade a U.S. pediatric patient has received those organs in a single transplant. "It was scary, exciting, all the emotions you can imagine," said Sherrouse, describing her initial reaction when doctors told about the surgery. "But I feel great now and can't wait to go home and be with my family again." She said she looks forward to finishing high school, going to culinary school and becoming a chef. The organs all came from a single donor, about whom doctors provided no information. They became available in the dawn hours of June 22, just 11 days after Taylor went on the United Network for Organ Sharing waiting list. Her team acknowledged such a short wait was remarkable. Sherrouse has been a Texas Children's patient for 12 years, treated frequently during that time for recurring liver problems and respiratory infections as a result of her cystic fibrosis, an inherited disease that occurs in about one out of 3,000 live births. She has been in the hospital the past eight months as her condition worsened. Sherrouse still has cystic fibrosis, but it cannot return in the transplanted organs, doctors said. The biggest challenge will be rejection issues involving the transplanted organs, said Dr. Jeffrey Heinle, who performed the heart and lung portion of the transplant. She will be on immuno-suppressant drugs for the rest of her life. Click here to see the story in its entirety.
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Upcoming Events
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Many IMH chapters have exciting fundraisers planned for this fall to raise funds and awareness for CHD. If you are in the area, please support your local chapter!
IMH Columbus: It's My Heart Walk for Congenital Heart Defects with the American Heart Association on August 28th
IMH Southern Minnesota: Hazel's Lasting Imprint: Southern Minnesota Chapter's 1st Annual It's My Heart Walk for CHD on September 11th
IMH Metro Philly: Zach's Tracks For The Heart: Metro Philly CHD Awareness Walk on September 25th
IMH Greater Seattle: 1st Annual Greater Seattle CHD Awareness Walk on October 2nd
IMH Northern New Jersey: Northern New Jersey Chapter CHD Awareness Walk on October 3rd
IMH Metro Detroit: Metro Detroit Big House Big Heart Event on October 3rd
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| CHD Birthday |
Nolan Beckert Emma Lowther August 26, 2007 August 28, 2007
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!
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 newsletter@itsmyheart.org. |
Nurse Recognition Award
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Jody Bock, RN, CNS has been named the recipient of the Colloquium's Heart Failure Nurse Recognition award for 2010. Jody is the Director of Professional Practice at the Banner Heart Hospital in Mesa Arizona. Taking on the responsibility Heart Failure Coordinator at Banner, Jody's leadership was integral to Banner's heart failure improvement process. However, those nominating Jody cited her kind and caring approach to patients and their families as her core value. Her professionalism serves as a role model for other nurses. Incorporating evidence based practice into the clinical arena rounds out her efforts at process improvement. True to form, when told that she was to receive the award, Jody cited the importance of others by saying, "Nursing is an important part of the team that together cares for our patients and families. I am honored to be recognized as a nurse that cares passionately for heart failure patients." Honoring Florence Nightingale on the 190th anniversary of her birth, the Healthcare Accreditation Colloquium recognizes all heart failure nurses through the Heart Failure Nurse Maven Award. A maven is a trusted expert who seeks to share knowledge for the benefit of others. This award is granted to a nurse maven who exemplifies what is best in heart failure nursing. We support heart failure nurses by affirming their important role on the lives of those with heart failure. The Colloquium will recognize a new heart failure nurse each month. The nomination form can be found on the Colloquium's website: www.thacinc.comFor more information, contact: Susan Reed, RN, BSN - Heart Failure Nurse Recognition Committee Chairperson at: susan.reed@thechristhospital.com, susan.reed@thechristhospital.com or (513) 585-2685. |
| Someone loves IMH! | My 7 month old has had a pacemaker since she was 6wks old. She is doing great now! We just had an awesome appointment at the Children's Hospital. When she had her surgery in January, we recieved a care package from you and it helped us so much! Thank you It's My Heart!
From Angela on the IMH Facebook page
Do you know someone who loves IMH? Send a story of how someone you know reached out to the CHD community! Email newsletter@itsmyheart.org. |
| 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 |
Recurring monthly donations from: *Beth Jacobson One time donations from:
Thomas
Matese in honor of Luke Jahnke Elizabeth
Drouet in memory of Faith Drouet Samantha
Williams in honor of my awesome little guy, Avery Williams
Donations from the CHD Awareness Campaign Facebook page:
Keriann
Brooks Shumate Kim
Harris Karla
Lindemon
The following people donated to Sage McNamera's Birthday
Wish: Karla Lindemon Thomas F. McNamera Caroline Ferdig
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 | |
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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