Blog Archives

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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Meet Shannan Wierzbicki: Coordinator for Mended Little Hearts of Volusia County

July 12, 2012
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My name is Shannan Wierzbicki, I am the Coordinator for Mended Little Hearts of Volusia County. I started our group in July 2011 and support families in Volusia County, FL. We meet the second Friday of every month at Halifax Medical Center, France Tower Classroom D, Daytona Beach, FL from 6:30pm-7:30pm. Mended Little Hearts is important to me because my son was born with multiple congenital heart defects, and now that he is healthy and strong I felt it was important to start a local group and help the families of my area. I remember how important it was to me to have someone to reach out to who knew what I was going through. Visit our website for more information about MLH of Volusia County www.volusiacounty.mendedlittlehearts.net. We are also on facebook as Mended Little Hearts of Volusia County. You can visit either of those sites to get updates and see what we have been up to. The day after mother’s day 2008 I found out I was pregnant. My husband and I had tried for a long time to have a baby and to find out after Mother’s day was the best gift ever. Everything was going great during […]

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Join MLH of Lynchburg, VA for an Ice Cream Social

July 11, 2012
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Friday, July 13 Ice Cream Social Open Discussion “What are your worries raising a child with a heart defect” Lynchburg General Hospital, Dolan Conference Room 7:00-8:00 They will be updating their photo board that is used for display at fundraisers and meetings. If you could bring an updated picture of your child or yourself (if you are one of our adult members) they would love to have your picture displayed. You can bring the picture to this month’s meeting or you can email it to mlh.lynchburg@gmail.com. Current News: Faith Guthrie celebrated her 2nd Birthday, June 24th. Blaise Kluender will be having surgery July 11th. If you would like more information about this meeting or joining MLH of Lynchburg you can contact Rebekah at mlh.lynchburg@gmail.com.

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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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Meet Mindy Younger, Co-Coordinator for MLH of Colorado Springs

June 19, 2012
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My name is Mindy Younger and I am the Co-Coordinator for Mended Little Hearts of Colorado Springs.  I have been involved with MLH since we chartered our group in August of 2010.  I became Co-Coordinator September of 2011. Being a part of Mended Little Hearts has been such a blessing.  I have three children, two who were born with a Congenital Heart Defect.  Our daughter Emma was born in August of 2006.  She was born with Hypo Plastic Left Heart Syndrome (HLHS).  She had the Norwood Procedure at 11 days old and spent 6 weeks in the hospital.  She wasn’t eating well on her own and needed a G-tube.  Her Heart wasn’t strong enough after her G-tube surgery and Emma passed away in November 2006 when she was 3 months old.  She lived exactly 100 days.  Emma is such a blessing in our lives and I am grateful for her being in our lives even though it was for a short time.  Our second child Thaddeus was born January of 2010.  He was born with a Coarctation and a VSD.  He had surgery when he was 2 days old and spent 3 weeks in the hospital.  He is now 4 […]

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Meet Andrea Baer Lead Coordinator for MLH of Southwestern, PA & National Growth and Development Coordinator

June 12, 2012
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Meet Andrea Baer Lead Coordinator for MLH of Southwestern, PA & National Growth and Development Coordinator

My name is Andrea Baer. I am the local Lead Coordinator for Mended Little Hearts of Southwestern, PA and I serve on the National Steering Committee as the National Growth and Development Coordinator. I have been a coordinator for almost 3 years and have served on the National Board for 2 years. My journey to Mended Little Hearts started on St. Patrick’s Day 2009. I went to the hospital to deliver my 3rd child. Not expecting anything but typical delivery pain. Boy was I wrong. 6 hours after the birth of my son Trenton, we were given the news that he had a Congenital Heart Defect and would need open heart surgery to survive. While everyone was drinking green beer and singing Irish tunes I was trying to comprehend how this could have happened. I can remember thinking to myself while the doctor was talking to me that this really had to be a mistake. That these kinds of things don’t happen to people like me. A Baby with a heart defect? My baby? It was overwhelming. I was afraid, hopeless and alone. I couldn’t even spell or say the name of this “defect,” how on earth was I going […]

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Phoenix Children’s Hospital is Offering a 2 Part Baby Massage

June 7, 2012
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To learn more about this or to join Mended Little Hearts of Phoenix, please contact them: For Mended Hearts Everywhere, Mended Little Hearts of Phoenix 602-345-0674 www.phoenix.mendedlittlehearts.net phoenixaz@mendedlittlehearts.org Phoenix Children’s Hospital is offering a 2 part baby massage opportunity. Opportunity #1 The International Loving Touch® Foundation, will be holding a “FREE” Parent-Baby Massage Demonstration Class. In this class you will learn the Art of Infant Massage. Parents will be guided through instruction on how to massage their babies. There are only a few spots left for the “free” baby massage course. Call today. Local Contact: Tarah Shideler 602.933.2207 (O) 602.201.1819 (P) tshideler@phoenixchildrens.com Opportunity #2 The International Loving Touch Foundation, Inc. invites you to become a Loving Touch® Certified Infant Massage Instructor (CIMI®) through this Evidence-Based Training Program. Upon certification you will be able to teach the Loving Touch® infant massage techniques to parents and caregivers. Infant Massage is a parenting enrichment program that provides loving touch right from the start. Incorporating Loving Touch Infant Massage in your program curriculum, assures the Infant Mental Health and Social/Emotional Development focus, which is required in providing best practice and meeting performance standards. Local Contact: Tarah Shideler 602.933.2207 (O) 602.201.1819 (P) tshideler@phoenixchildrens.com

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