Posts Tagged ‘ CHD ’

MLH Funds CHD Research for Heart Month

February 1, 2013
By

As you may know, February is Heart Month and February 7-14 is Congenital Heart Defect (CHD) Awareness Week (officially recognized in many cities, counties and states).  We at Mended Little Hearts were thinking, “How can we make a bigger difference for children with CHD and their families this Heart Month?”  We thought a lot about what we were working so hard to create awareness for and why. One of the main things we create awareness for is CHD research funding, right?  We all know it is underfunded and therefore too many of our kids are having problems and some are becoming angels way too soon.  So, we decided to do something about it and fund research this year. We then decided that we didn’t just want to fund research in general, but we would pick a specific project–one that we felt was making a big impact.  We picked the Joint Council on Congenital Heart Defects’ Quality Improvement Collaborative as our project (https://jcchdqi.org/). You may ask, “Why did you choose that project over others?’  Good question.  Here’s why: It involves multiple sites (46 different hospitals participate–woohoo!) The JCCHD involves several great CHD organizations It has a direct impact on babies’ lives. Data is being […]

Read more »

Neurodevelopmental Issues and CHD – Webinar

November 2, 2012
By

This webinar on Neurodevelopmental Issues and CHD is hosted by Mended Little Hearts and presented by Dr. Brad Marino of Cincinnati Children’s Hospital. It took place live online on September 7, 2012.


Neurodevelopmental Issues and CHD from Jodi Lemacks on Vimeo.

 

 

Say Thank You to Your CHD Child’s Cardiology Team, FREE Printable!

October 25, 2012
By

The next time you head off to see your CHD Child’s Cardiologist, pediatrician, or pack for surgery, print off some of these sweet Thank You slips.

Print them off on card stock, cut the page into quarters and have your child sign, or color on the back of it. Tape a Hershey’s Kiss to each card and pass one to the nurse taking care of your child. My experience says that everyone loves chocolate! Don’t forget to pass one to the X-ray, Echo, or Packemaker tech!  After surgery, when you are seeing the same housekeeping and cafeteria staff in your child’s room, pass one to them too. Everyone who takes care of your child during visits or hospital stays can get a sweet Thank You from your family! Read more »

Back to School ABC’s for CHD Kids

September 24, 2012
By

Mended Little Hearts and CardioSmart have joined together to provide parents and caregivers of children who have congenital heart defects with some back-to-school tips. Most children are now officially back to school for the 2012-2013 school year.   Whether your child is in preschool or grade school, if your child has a congenital heart defect (CHD), there are a few things you may want to consider for the beginning of this school season.   Plan for Emergencies Written Plan:  Parents and caregivers want to be sure to communicate a plan for emergencies with the child’s school administration, teacher(s), and school nurse (if your school has one).  Work with your child’s cardiologist to create this plan.  It would also be helpful to get input from your child’s pediatrician or family practice doctor.  Although emergencies are unlikely to occur, having a written plan can make everyone feel more comfortable about caring for your child during the school day. AEDs and CPR: Parents and caregivers will want to ask their child’s school administrators if they have AED (Automated External Defibrillator) devices and how many people are trained in CPR (cardio-pulmonary resuscitation).  This is good information for parents to have.  You can encourage your school to be prepared […]

Read more »

The 2012 Neediest Kids Championship at the TPC Potomac at Avenel Farm Golf Course

July 1, 2012
By

The Neediest Kids Championship has become one of the premier events on the Nationwide Tour. Played at the TPC Potomac at Avenel Farm Golf Course, the 2012 tournament is set for October 4 thru October 7 and will again be televised worldwide on the Golf Channel. This event is more than just a golf tournament, it is a community-wide celebration with something for everyone including instructional clinics for adults and kids, Family Day on October 6, multiple Pro-Ams and networking events! Thursday of tournament week the professionals take center stage as they vie for their share of the $600,000 purse. Tickets FORE Charity allows 100% of the proceeds from ticket sales to go directly to Mended Little Hearts to help families with children who have congenital heart defects around the nation. Tickets may be purchased in honor of, or in memory of, a loved one. Click here to purchase your event ticket: http://events.constantcontact.com/register/event?llr=u5nowcdab&oeidk=a07e62oxp6s80f540db

Read more »

Meet Pam Camit, Co-Coordinator for MLH of Greater Portland

June 27, 2012
By

My name is Pam Camit and I am the Group Co-Coordinator for Mended Little Hearts of Greater Portland in Oregon. Our group was chartered in March of 2012 and we have already built some fantastic relationships with other local heart families. We have volunteered at both Ronald McDonald houses in our area, walked in the Jr. Rose Festival Parade and we are gearing up for our first family picnic. I have four kids, two are grown and out of the house and two young boys. My youngest, Ben, was born with Atrioventricular Septal Defect and Patent Ductus Arteriosus in 2008. He had his Open Heart Surgery at three months of age and due to that procedure he has acquired Mitral Valve Regurgitation. He currently takes Lisinopril daily to hopefully prolong the next surgery he will inevitably need. It was a shock for my husband and I to find out that Ben was born with Congenital Heart Defect. Not unlike many parents, we had no idea what CHD was or meant for our child. He was diagnosed on his second day of life. I remember pouring myself into the internet for answers. Why? How? What did I do wrong? Eventually I […]

Read more »

Taking it to the TODAY Show

August 4, 2010
By
Taking it to the TODAY Show

Watch the TODAY Show on Thursday, August 5, 2010 to see Angee and Riley! This past January, Angee Brock, a member and coordinator for Mended Little Hearts of Mississippi, discovered the TODAY Show’s “Everyone Has A Story” contest while looking for ways to spread CHD awareness.  Immediately, Angee knew this was the perfect opportunity to share her daughter’s story of her fight with CHD.  She wrote an essay and sent photos to paint the picture of their struggle to keep Riley alive, her treatments and surgery over the past two years, the ways she has found to help her cope and what she hopes and expects the future to hold for Riley. Two year old Riley is a CHD warrior, an adorable little girl with blond hair and blue eyes, an infectious smile and a stubbornness that helps her hold her own with three older siblings.  She has been through so much to survive her journey with CHD.  Angee is an amazing single mother who works hard to raise her four children and keep her youngest alive and healthy.  She is also very passionate about spreading awareness of CHD and helping other families who are traveling the same journey as her […]

Read more »

Congenital Heart Futures Act – Take Action Today!

July 15, 2010
By
Congenital Heart Futures Act – Take Action Today!

The Mended Little Hearts, in partnering with other CHD organizations, has achieved great success in Federal legislation with the passage of the Congenital Heart Futures Act. Now, the lawmakers must put money behind what they agreed to in this law. For more information about the Congenital Heart Futures Act, please visit our advocacy page. TAKE ACTION RIGHT NOW: The budget process is moving along. The people who assign the money (appropriations) are going to be making their lists of what to include in the budget: The House Appropriations Committee’s Labor, Health and Human Services (HHS) and Education Subcommittee is scheduled to mark-up the FY-2011 Bill this afternoon! The Senate Subcommittee will follow shortly. Urge your Senators and Representatives to contact the Chairpersons of the Health and Human Services Appropriations Subcommittees to ensure they include money in the Fiscal Year 2011 Labor, Health and Human Services Appropriations bill to fund the congenital heart disease surveillance system at the Centers for Disease Control and Prevention. You can do this in two easy ways: Call their office today. Write your legislators Call their office today. CALL YOUR LEGISLATOR: Find the contact information for your legislator at www.senate.gov or www.house.gov Call the number listed […]

Read more »

4th Annual CHD Symposium

June 25, 2010
By
4th Annual CHD Symposium

July 16 & 17, 2010, Madison, WI Parents and Caregivers, come learn and network with other families of children with Congenital Heart Defects. Learn the latest in medical advances, how to navigate the insurance maze, growing-up with CHD and much more… Friday, July 16, 6:30 p.m. – 8:30 p.m., Ice Cream Social, American Family Children’s Hospital Saturday, July 17, 2010, 8 a.m. – 4:30 p.m., Conference, Monona Terrace and Convention Center Presented by: Mended Little Hearts and Saving Little Hearts American Family Children’s Hospital and the UW Department of Pediatrics With Additional Sponsorship from: Kohl’s, St. Jude Medical and the American Heart Association Cost: Because of the generosity of our sponsors, there is no cost to attend this conference. Meals: Some light snacks will be offered at the conference, however meals will be on your own. You are welcome to purchase a boxed lunch on site at the conference or go out for lunch at one of the many restaurants that are within walking distance of Monona Terrace. We apologize, but no outside food is allowed at the Monona Terrace Convention Center. Childcare: Complimentary childcare will be provided on site. Please be sure to let us know in advance if […]

Read more »

Little Hearts Hold Big Price Tags-

January 19, 2010
By
Little Hearts Hold Big Price Tags-

Congenital Heart Defects are among the most costly diagnosis for children. The highest average hospital charges accrued for infants were those with hypoplastic left heart and common truncus arteriosus, followed by coarctation of the aorta and transposition of the great arteries, according to a CDC study published in the January 19, 1997 issue of the Morbidity and Mortality Weekly Report. (http://www.medscape.com/viewarticle/551060) In the first 7 days of his life, my son, Nicholas, experienced 3 different hospitals, his first helicopter ride and open heart surgery, all to a tune of nearly $100,000. It only took nine months of discussions with the insurance company to get them to cover the majority of our expenses. Jodi Lemacks, President of Mended Little Hearts, was not so lucky. Her experience is representative of many families dealing with the financial devastation resulting from treatment of congenital heart defects. Jodi’s incredible journey has been documented by The Washington Post, in conjunction with the Kaiser Foundation, found here: http://tiny.cc/NTPFM Mended Little Hearts advocates for accessible, affordable, and adequate health care, providing the voice for the littlest heart patients of all. We partner with other organizations to address the need for insurance reform including elimination of lifetime caps, elimination of […]

Read more »