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Greetings! |
Those of us within the Congenital Heart Defect (CHD) community have historically been frustrated that the American Heart Association (AHA) has not made research for CHD's more of a priority. They have not hesitated to use the faces of children to illicit sympathy, but the allocation of their research funds has shown that children have not been a priority.
On Monday, September 22nd, Corrie Stassen, Executive Director for It's My Heart (IMH), and I participated in an event that gave me hope that things are changing in our favor. The AHA invited us to participate in a Health Care Reform Debate. Other participants included representatives from the March of Dimes (MoD), American College of Cardiology, First Focus and other CHD specific groups. The purpose of the event was to highlight concerns for families that find themselves dealing with piles of hospital and doctors bills and the constant stream of Explanation of Benefits from their Health Insurance. The AHA employed the service of such experts as the Health Policy Research & Development and Karen Pollitz (a Research Professor at Georgetown University's Health Policy Institute). After expressing our concerns, we spent the afternoon summarizing and creating the foundation from which potential Health Care Reform could be constructed.
IMH has done a great job creating awareness about CHD's, and partnering with household names such as the AHA and MoD will clear greater paths for those of us at the grassroots level.
The next day, we met with Texas Senator John Cornyn and his Legislative Administrator Martin Sobel. The meeting was very informative and Mr. Sobel was extremely gracious with his time and advice. Next, we met with Oklahoma Senator, Tom Coburn's office. He is an active OB/GYN, and he is the type of legislator that we want to establish a relationship with. After meeting with Tom Coburn's office, we met with Texas Senator Kay Bailey Hutchison's office, and Congressman John Culberson's office. Coincidentally, one of their interns has a CHD, Ventricular Septal Defect (VSD), illustrating that indeed this is America's #1 Birth Defect and you never know when someone working around you is directly affected! We were well received at all the offices and it was an excellent opportunity to introduce ourselves. We did some advocacy and increased CHD awareness. We put the bug in their ears that we will be returning in just four months for CHD Lobby Day on February 10, 2009!
FYI - We will be calling for one page stories with a photo of the CHD patient to put into a Scrapbook/Notebook type of presentation that we will leave at certain offices in February. Keep your eyes peeled for that request!
We are very excited to report that the morning after we arrived home; we received an invitation to participate in a CHD meeting in October with the Centers for Disease Control (CDC). In addition to participating, we have been requested to do a presentation during the Family Perspective section of the agenda.
Our ability to speak out on a national level is a direct result of the donations given to IMH. This allows us to continue providing outreach, education and support for those affected by Congenital Heart Defects.
Your contribution whether it is cash, a desktop or a laptop, airline miles, perhaps signing up with your workplace during the charity giving campaign, a corporate matching gift or even a provision in your last will and testament which are all tax deductable. Further still, it all goes toward keeping It's My Heart working for and on behalf of all of those who are affected by this dreadful disease.
Together we will make a difference... and you can be the difference by making a donation today.
Thank you.
From the Heart,
Danica R Botello
Outreach & Advocacy Director |
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Quote of the Month |
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Everything that irritates us about others can lead us to an understanding of ourselves.
- Carl Jung |
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| Volunteer Meetings |
Thursday, October 9, 2008
Meeting times and location vary by chapter.
"...no matter how big government gets, and no matter how many services it provides, it can never take the place of volunteers."
- Ronald Reagan, 40th U.S. president
For more information in your area, go to www.itsmyheart.org, Click on "IMH Chapters" to see specifics about upcoming events. Make sure you sign up on line to receive e-mails from your chapter by clicking on the link at the bottom of this email.
As always, please be considerate about germs and take precautions if you've been around anyone who has been sick. Most of our children have compromised health. |
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Dr. Heart to Heart |
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...I find that I am still very protective. I want my daughter to sleep right next to me in our bed. I'm scared of putting her in the crib. She naps in the same room as me. I am reluctant to give her bottles and would rather nurse. I haven't left her for more than an hour or two and that was with just my husband.
Is this normal behavior for a heart mom? Do you ever stop worrying? Wow, what a great question. Fear can be a driving force that dictates our actions and motivates us to act in certain ways. Fear is suppose to drive us, but the key to know if fear is doing its job is to determine if the fear is realistic or has become controlling. When faced with the reality of your child's health issues, certain fears are reasonable and expected. Learning to handle fear in a healthy way is the key to living a life that is driven by love and not paralyzed by fear. Ask yourself what keeps you from putting your daughter in her bed. Is having her in your bed change the fear or the outcome you are fearing? Many people have their children in the "family bed". It has been a controversial topic and there are arguments on both sides of the issue. Reading articles and talking with doctors on both sides can help you determine if you accept the decision with both the potential advantages and potential disadvantages. It will also help you determine if your decision is just based on the fear of your daughter being out of the room. The second issue I hear is the lack of time for you to recharge your own "battery". It can be difficult to leave a child in the care of someone else. It is necessary to maintain relationships outside of your child for your own health. Our children (nor our spouses, for that matter) cannot fill all our emotional needs. We need many relationships to maintain our emotional health. It may be hard at first to find someone to stay with your child. Start slow. Find someone who is willing to come and be with you and your daughter while you are home and take the time to train them while you are there. You may want to ask another heart mom in your area since they are aware of the special health issues. Babysitting co-ops can help ease the financial burden of having a babysitter too. The first time leave for a short errand or just spend time outside going for a walk. As you feel more comfortable with the person you have chosen, leave for longer periods of time. Plan a date night with your spouse and surprise him/her with all the attention they got before your sweet baby came along. They may be missing that part of your relationship. You will find a renewed sense of strength to run the marathon before you. Remember raising a child is not easy. You will find having partners in the task will lighten your load and make you a better mom (or dad). I think worry is a part of raising children, heart mom (or dad) or not. Again, the key is what you do with that worry. Allow yourself the freedom to not expect perfection from yourself. Do the best job you can and then sit back and enjoy seeing your child's personality blossom and grow in front of you. If you feel that worry and fear are controlling you, seek a professional counselor or psychologist to discuss your concerns. The emotional and physical trauma many parents have experienced dealing with their child's medical issues can be overwhelming. Being able to talk to someone who can help you work through the process of living a life that is not controlled by fear and worry will make the journey more bearable. Dr. Heart to Heart would love to hear your questions, please e-mail newsletter@itsmyheat.org. |
| Heart Journey - Ella-Mai |
Ella-Mai's story is told by her parents, Rebecca and Martin.
Hi, I would like to share with you my little miracle's rollercoaster over the last 10 months of her life.
Ella-Mai was born the 2nd of October 2007. She was seven weeks early as her heart rate had slowed down. So we went in for an emergency cesarean. We were expecting to see a small baby, but healthy. She was far from healthy.
Ella-Mai weighed 3lb 12oz and was so tiny and precious in the incubator with wires and tubes all over her. I sat beside her cot just gazing at the poor little thing.
Then at four days old a heart murmur was picked up on Ella-Mai and an echo was done. She was diagnosed with Tetrology of the Fallot with Absent Pulmonary Valve Syndrome.
The hope we were given for her was very little but we just took each day as it came and crossed every bridge as we got there fighting strong with her. Then at three weeks old we were told Ella-Mai had caught Nec (a stomach infection) and was transferred to another hospital where we were told we may have to make that decision at some point to turn off the machines. We just sat there in a gaze and prayed that she could fight this. She looked so helpless, ventilated and on paralyzing drugs. It was awful. We were told babies with Ella-Mai's heart defect don't usually make it past the 20 week scan and she's very lucky to be where she is now. But after a week we were back to our home town hospital and she was well again.
After 13 weeks in the NICU we were allowed to take Ella-Mai home for the first time it was extremely nerve racking but exciting at the same time.
After having her home for only five days Ella-Mai caught RSV Broncillitus and was sent to Bristol Childrens PICU ward where she spent her first Christmas and New Year ventilated.
Eventually, after three months the surgery was done. It was the worst six hours of our lives. The first night we didn't leave her bedside. Machines were going off, her blood pressure was up and down, and her saturations were all over the place. It was a nightmare. Why her? This poor little girl didn't know any different life; just that it was a big struggle to be here.
Two days after her operation we were told because of where the pulmonary artery was so enlarged it was compressing on her right airway which may cause her to need help with her breathing and have a tracheotomy fitted.
The Broncoscopy was carried out three weeks later and they decided to give her the benefit of the doubt and see if she can maintain on her own, which she did.
After nearly six months in the hospital, Ella -Mai was finally allowed home without a tracheotomy or oxygen, just an NG feeding tube.
In the 10 months Ella-Mai picked up several chest infections and pneumonia but is home now and hopefully for a while.
We never knew Ella-Mai had such a severe heart defect as it wasn't picked up on any of my scans. All we can say is that she is a little fighter and one miracle baby. Just never give up hope.
Do you have a heart journey to share? E-mail newsletter@itsmyheart.org for more details.
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| CHD Birthdays |
  
Tyson Floyd Gasaway JaLee Kaye Lucas Melena Ariana Abeita
October 5, 2006 October 5, 2007 October 13, 2005
Please send us your child's birthday and picture the month before their big day so we can all celebrate your child's birth with you!
We also want to celebrate all our angels birthday's too! So, please send us their information so we can include them as well! E-mail to newsletter@itsmyheart.org. |
| CHD Research Opportunity |
Hypoplastic Left Heart Syndrome is one of the most severe heart defects and also one of the most difficult to treat. We know very little about what causes HLHS but there do seem to be important genetic factors. Doctors at Texas Children's Hospital are leading a genetic study of HLHS. The study will look at all of the genetic material in each small blood sample for genetic changes that might cause these heart defects. The study uses new "gene chip" technology that is being used with great success for many common diseases.
The doctors need your help. If you or your child is has a coarctation of the aorta, aortic valve stenosis, or hypoplastic left heart you are invited to join this study. The researchers need one tube of blood (about 1 to 1 1/2 tsp) from affected children and their parents. There is no cost to take part in this study.
Please call 832-822-4281 for more information.
This study is funded by the National Institutes of Health and has been approved by Baylor College of Medicine. |
| IMH Happenings |
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Houston
It's My CHD Carnival
October 11, 2008
1pm - 5pm
Living Word Church of the Nazarene at Bear Creek
Fort Worth
Fall Festival/ Health Fair
October 18th
Mansfield Baptist Church
Haunted House
October 25th
6921 Bennett Lawson, Mansfield, TX 76063
New Jersey
Card-A-Thon Hosted for Deborah Root by Jen Peel
Saturday, October 18, 2008
10:00 a.m. - 6:00 p.m.
Randolph, NJ
Visitor appreciation Day at TURTLE BACK ZOO
FREE ADMISSION for everyone!
Saturday, October 25th
10 AM to 2 PM
Essex County Turtle Back Zoo
560 Northfield Avenue, West Orange, NJ
For information, please call 973-731-5800
Congratulations to our chapters: Hudson Valley, New York; Northern New Jersey; Austin, Texas; and Boston, Massachusetts for their recent fundraisers which brought in over $60,000! Keep up the good work for the continued support of bringing awareness to our communities and supporting those affected by CHD. To learn more about upcoming events or how to get involved, visit our chapters at www.itsmyheart.org. |
| Donations |
Janie Blain donated for Jamie & Loren Miller.
Terence Loudon donated for research.
Linnette Bagdadi for Nicholas Venturi.
Sandra Taltavull for Nicholas Venturi.
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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It's My Heart is dedicated to our mission which is to provide support, spread awareness, educate and advocate for those affected by Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community. Creating chapters of IMH throughout the country is imperative to our ability in achieving our mission.
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 becoming a Regional Coordinator in your area, please contact the It's My Heart National Office at (281) 578.7343 or (888) HEART.07 or e-mail chapters@itsmyheart.org. | |
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