Posts Tagged ‘ Congenital Heart Defects ’

MLH Funds CHD Research for Heart Month

February 1, 2013
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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 […]

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Lauren Gray our CHD Awareness Chair is Surviving CHD

December 30, 2012
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Lauren Gray our CHD Awareness Chair is Surviving CHD

You can’t tell it to look at me, but I have had 4 bouts of pneumonia, 5 catheterizations, 2 open heart surgeries, numerous blood transfusions, countless iv’s, ekg’s, echocardiograms, x-rays, trips to the cardiologist or ER and have taken a plethora of antibiotics in my 40 years. I’ve had many otherwise minor health issues compounded by my heart defect but, the reality is that I am one of the lucky ones. I was born with Tetralogy of Fallot in a rural town in North Carolina. They were not equipped to handle my condition so I was sent to a medical school in a larger town where they performed what was supposed to be a temporary repair. That temporary repair lasted for 17 years with minimal intervention. At age 17 it was determined that a more stable repair was needed. You can probably imagine that as a young teenage girl I was not exactly thrilled about having surgery. In the vainness of my youth I was far more concerned about the scar that would be left on my chest than about the extension and quality of life the surgery would produce. Plus, it wasn’t exactly my definition of how to spend […]

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Neurodevelopmental Issues and CHD – Webinar

November 2, 2012
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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.

 

 

Back to School ABC’s for CHD Kids

September 24, 2012
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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 […]

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Nicole Sanchez is Surviving CHD

August 25, 2012
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My name is Nicole Sanchez and I was born on January 4th, 1983 with tricuspid atresia. With TA also comes normally related great arteries with a small ventricular septal defect and rudimentary right ventricle. Basically this means that I was born without a tricuspid valve, and because the valve did not form, neither did my right ventricle. I had two closed-heart surgeries as a baby including a BT shunt placement. In November of 1988, I had open-heart surgery, a Fontan procedure. Since my Fontan, I have been fortunate enough to not need any more surgeries. I do see a cardiologist every year for an EKG and Echo, and there’s the occasional heart monitor or stress test, but so far, so good…Not to say there haven’t been a couple of tiny bumps in the road, but at the end of the day I have led a relatively normal life. I grew up with two brothers (one older, one younger- both heart healthy), went to public school, had a job since I was 14, traveled with friends and studied abroad during college, and have even walked in a half marathon through the streets of San Francisco.  My mother once told me that […]

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Brittany Paquette is Surviving CHD

July 26, 2012
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Last week I announced our newest blog feature “Surviving CHD,” a blog series about our adult members with a lifetime of experience. We have an awesome group of adults who are excited to share with us. This week Brittany Paquette is our very first guess blogger in this new series. Brittany is the Teen Coordinator for one of our newest groups MLH of Portland Oregon. This may be a new group, but they have taken off running, participating in many community events. Meet Brittany Paquette: Hello my name is Brittany Paquette. I was born with Tetralogy of Fallot. I’m now 22 years old and have had 5 Open Heart Surgeries with more to come. I’m really passionate about Adult Congenital Heart Defect support. I grew up with the just the support of my family and friends. There was no such thing as a group like Mended Little Hearts. I want to incorporate as many teens and young adults as I can into Mended Little Hearts. I want to be able to give teens and young adults hope and be able to communicate with them about our struggles as CHD survivors. CHD is not something to hide from or be ashamed […]

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

July 1, 2012
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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

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

June 27, 2012
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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 […]

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Pulse Oximetry Screening: An In-Depth Look at the Issues

July 14, 2011
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Pulse Oximetry Screening:   An In-Depth Look at the Issues

Pulse Oximetry Screening:  An In-Depth Look at the Issues Join us for a Webinar on Tuesday, August 23 8pm -9pm EDT This webinar is second in a series of three and is designed to give an in-depth look at issues surrounding pulse oximetry screening so that advocates can effectively communicate with their legislators.  Like the first webinar, this is for both new and experienced advocates and for people who would simply like more information on this important issue.  Participants will: • learn to distinguish myths versus reality about pulse oximetry screening. • receive information about a successful multidisciplinary site implementation of pulse oximetry screening. • learn the tools necessary to communicate this information to their legislators to effectively advocate for pulse oximetry screening in their state. Featuring: Gerard Martin, MD, FACC, Children’s National Heart Institute Elizabeth Bradshaw, MSN, RN, CPN, Children’s National Medical Center Amy Basken, National Advocacy Chairperson, Mended Little Hearts   System Requirements PC-based attendees Required: Windows® 7, Vista, XP or 2003 Server Macintosh®-based attendees Required: Mac OS® X 10.5 or newer After registering you will receive a confirmation email containing information about joining the Webinar. Space is limited. Reserve your Webinar seat now at: https://www3.gotomeeting.com/register/788801926

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Save the Date – Webinar – Pulse Oximetry Screening: An Introduction to Advocacy Issues

July 9, 2011
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Save the Date   Mended Little Hearts has partnered with the American College of Cardiology to Present: Pulse Oximetry Screening:  An Introduction to Advocacy Issues   This webinar is designed for anyone who wants to learn more about pulse oximetry advocacy—whether you are a new or experienced advocate.  Participants will: learn what pulse oximetry screening is and what it isn’t. learn benefits of pulse oximetry screening and obstacles to effective use of pulse oximetry screening. be able to identify key issues of pulse oximetry screening occurring at the federal level and the state level.  be provided with tools to constructively advocate in their home district This webinar will take place on Tuesday, July 26, 2011 at 8:00 p.m. EDT, 7:00 Central, 6:00 Mountain and 5:00 Pacific.

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