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WHAT DID THE 2008 ANNUAL PICNIC MEAN TO ME?
Members traveled from 15 different states - we had 6 pediatric cardiologists, 2 nurses, 1 cardiothoracic surgeon, 25 bikers from the Columbia Harley Owners Group of CT and over 700 members and their family joined us at our 12th Annual Picnic on June 1, 2008. Here’s what a few of them had to say about the day.
WHAT DID THE 2007 ANNUAL PICNIC MEAN TO ME?
We had over 700 Little Hearts members and their family join us at our 11th Annual Picnic on June 3, 2007. Here’s what a few of them had to say about the day.
WHAT DID THE 2006 ANNUAL PICNIC MEAN TO ME?
Here’s what a few of the members who joined us at our 10th Annual Picnic on June 4, 2006 had to say
WANT TO SHARE YOUR CHILD’S STORY?
ALCAPA - Tiernyn, born 2005
Aortic Stenosis - Brandon, born 1995
Atrial Septal Defect - Justin, born 1999
Atrial Septal Defect, PDA, VSD, TA - Jan, born 1968
AVCD, unbalanced, Downs Syndrome - Gabriel, born 2003
AVCD, unbalanced - Gianna, born 2001
AVCD, unbalanced, PS, VSD - Madeline, born 2003
AVCD, unbalanced - Ryan, born 2004
AVSD - Benjamin, born 2005
AVSD - Emily, born 2003
COA - Caden, born 2005
COA - Nicholas, born 2002
COA , VSDs - Delaney, born 2005
COA, VSD - Stephen, born 2001
Coronary Artery between PA and Aorta - Benjamin, born 2000
DCRV - Erin, born 1993
DCRV - Raychel, born 2001
DILV - Charlie, born 2008
DILV, PS, TGA - Faith, born 2005
DILV, PS - Kimberly, born 1960
DORV - Alicia, born 1992
DORV, TGA, VSD, COA - Dylan, born 2005
DORV, L-TGA, VSD, ASD, PS, Dextrocardia - Eden, born 2005
DORV, TGA, ASD, VSD, PS, Dextrocardia - Kira, born 2002
DORV, TGA, VSD, PS - Philip, born 2002
DORV - Rebecca, born 2007
DORV, PA, MS, VSD - Savannah, born 2005
Ebstein’s Anomaly, ASD, PA - James, born 2003
HLHS SUCCESS RATES & STATISTICS
HLHS - Andrew/twin, born 2004
HLHS - Andrew, born 2004
HLHS - Annabel, born 2006
HLHS - Aubrey, born 2004
HLHS - Ayden, born 2008
HLHS - Ben, born 1990
HLHS - Bridget, born 1999
HLHS w/Intact Atrial Septum - Bryce, born 2005
HLHS - Collin, born 2004
HLHS - Cora, born 2005
HLHS - Daena, born 2001
HLHS - Dezo, born 2006
HLHS - Dylan, born 2004
HLHS - Eloise, born 2006
HLHS - Emily, born 2005
HLHS - Eva, born 2007
HLHS - Hannah, born 2005
HLHS - Jacob, born 1998
HLHS - Jack, born 2006
HLHS - Jeffrey, born 1996
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HLHS - Jessica, born 1987
HLHS - Josh - born 1999
HLHS - Joseph, born 2005
HLHS - Joey, born 2005
HLHS - Kallie, born 2005
HLHS - Kailey, born 1995
HLHS - Kyle, born 1990
HLHS - Liam, born 2004
HLHS - Lily, born 2006
HLHS - Lily Eve, born 2007
HLHS - Lindsay, born 2005
HLHS - Logan, born 2004
HLHS - Madison, born 2000
HLHS - Maggie, born 2005
HLHS - Makenzie, born 2004
HLHS - Malayna, born 2005
HLHS - Matthew P, born 2007
HLHS - Matthew, born 1997
HLHS (Tricuspid Valvoplasty) - Megan, born 2004
HLHS - Olivia, born 2005
HLHS - Susannah, born 2004
HLHS - Timmy, born 2001
HLHS - Tara, born 1992
HLHS - Zachary, born 2001
HLHS - Zachary/twin - born 2005
HLHS, PS - Michael, born 1998
HLHS, TAPVR - Jacob, born 1999
Long QT Syndrome - Kathryn, born 1993
Mitral Valve Stenosis - Sariah, born 2003
Omphalocele - Adriana, born 2005
Pulmonary Atresia w/IVS - Christopher, born 2002
Pulmonary Atresia w/IVS - Joseph, born 2005
Pulmonary Atresia - Nicholas, born 1999
Pulmonary Atresia, TGA - Olivia, born 2004
Pulmonary Atresia - Payton, born 2008
Pulmonary Atresia w/IVS - Sebastian, born 2001
Pulmonary Atresia, VSD - Sophia, born 2007
Pulmonary Stenosis, VSDs, Pacemaker - Missy/twin, born 2002
Pulmonary Stenosis (severe) & ASD - Kylie, born 2004
Pulmonary Stenosis, Aortic Stenosis - Matthew, born 2004
Shone’s Syndrome - Wren, born 2006
TAPVR, ECMO survivor - Brianna, born 2006
TAPVR - Camden, born 2004
TAPVR - Conor, born 2000
TAPVR - Grace, born 2005
Tetralogy of Fallot - Aamon, born 2004
Tetralogy of Fallot - Christian, born 2007
DiGeorge Syndrome
Tetralogy of Fallot - Elena, born 2005
Tetralogy of Fallot - Emilyn, born 2003
Tetralogy of Fallot - Emmanuelle, born 2003
Tetralogy of Fallot - Harrison, born 2004
Tetralogy of Fallot - James, born 2001
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Tetralogy of Fallot - Joshua, born 2004
Tetralogy of Fallot - Julia, born 2005
Tetralogy of Fallot - Landon, born 2007
Tetralogy of Fallot - Mia, born 2007
Tetralogy of Fallot, Pulmonary Atresia - Adriana, born 2005
Tetralogy of Fallot, Pulmonary Atresia - Andrew, born 2004
Tetralogy of Fallot, Pulmonary Atresia - Eddie, born 2002
Tetralogy of Fallot, Pulmonary Atresia, VSD - Janey, born 2004
Tetralogy of Fallot, Pulmonary Atresia - Penny, born 2007
Tetralogy of Fallot, Pulmonary Atresia - Tristan, born 2007
Tetralogy of Fallot, Pulmonary Stenosis, VSD - Addison, born 2005
Transposition Great Arteries, ASDs, ’Swiss Cheese’ VSDs, ECMO survivor - Aidenne, born 2008
Transposition Great Arteries, VSDs, ASD - Dale, born 2005
Transposition of the Great Arteries - Dylan, born 2006
Transposition Great Arteries, ECMO survivor - Emma, born 2003
Transposition Great Arteries, ECMO survivor - Evan, born 2004
Transposition Great Arteries - John, born 2000
Transposition of the Great Arteries, DORV, VSD - Kaden, born 2007
Transposition of the Great Arteries - Luke, born 2008
Transposition Great Arteries, ASD, VSD, Dextrocardia - Melissa/twin, born 2004
Transposition Great Arteries - Murphy, born 2004
Transposition Great Arteries - Zachary, born 2006
Tricuspid Atresia, VSD, PS - Annabelle, born 2005
Tricuspid Atresia - Bill born 1965
Tricuspid Atresia, TGA, VSD - Ewan, born 2004
Tricuspid Atresia - Hunter, born 2006
Tricuspid Atresia, TGA, VSD - Sullivan, born 2007
Truncus Arteriosus - Aoife, born 2006
Truncus Arteriosus - Brody, born 2006
Truncus Arteriosus - Corey, born 2002
Truncus Arteriosus, VSD - Ian, born 2004
Truncus Arteriosus - Mitchell, born 2006
Vascular Ring - Erin, born 1993
Ventricular Tachycardia - Josh, born 1999
VSD - Elizabeth, born 1995
VSD - Erin, born 1993
VSDs, ASD - Everett, born 1933
VSDs, ASD - Giuliana, born 2000
VSDs, PDA - Isabelle, born 2007
VSD, PDA, ASD - Nathaniel, born 2006
VSD, PDA, DCRV - Raychel, born 2002
MEMORIAL - Alayna
MEMORIAL - Avery
MEMORIAL - Benjamin of Forth Worth, TX
MEMORIAL - Caroline
MEMORIAL - Christina
Memorial - Colin (twin)
Memorial - Cullen
Memorial - Hannah
MEMORIAL - John
MEMORIAL - Lennon
MEMORIAL - Madison
Memorial - Sean (twin)
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Awareness Day 2008 - Little Kid, Big Hearts Sowams School of Barrington, Rhode Island held a fundraiser in honor of CHD Awareness Day for Little Hearts. The students donated their chore money and raised $500.00 for Little Hearts!
Awareness 2008 - A DAY OF HEARTS, A DAY FOR MAGGIE Little Hearts members, Faith and Ryan share their daughter’s story and hope in their state newspaper.
Awareness Article 2008 - A MESSAGE FROM THE HEART A very nicely done and informational article by Madeline’s parents and Little Hearts members, Christine and Brian.
Awareness 2008 - CHILDS HEART STILL BEATS AGAINST ALL ODDS Little Hearts member, Laura, shares Kailey’s story for Awareness Week.
Awareness - WICU12 News - MIRACLE BABY Little Hearts members, Roy and Angie share Aubrey and her story with others in PA on WICU12 news.
Awareness PSA - WDHA running CHD AWARENESS Public Service Announcements Little Hearts member and program director of WDHA ran CHD Awareness PSAs from 2/10-2/14 for Little Hearts! Many thanks, Tony!
Awareness Article 2008 - BOY DEFIED ODDS - AND DELIVERS HOPE Little Hearts member, Anne Marie shares her son and hope with the readers of the Poughkeepsie Journal.
Awareness Article - December 2007 - HEARTS FACE BETTER FUTURE Little Hearts member, Lynn, mom to Kailyn contacted her local newspapers in the fall of 2007 for an awareness article. CHD Awareness day is everyday!
Awareness Article 2005 - Toddlers face struggle with rare heart defects A member shared their child’s story with their local newspaper around CHD Awareness Day
Awareness Article 2006 - Making Strides Little Hearts member, Angela, tells her daughter’s story (HLHS)
Awareness Article 2007 - Healing Hearts Tara and Jason share their son’s story (who was born with Tricuspid Atresia) to bring awareness to others.
Awareness Article 2007 Dawn shares her son’s story with others in Oklahoma.
Awareness Article 2007 - Little Hearts for Valentines Day Ed & Melanie share their son’s story (Ethan, TOF) in local newspaper.
Awareness Article 2007 - A tale of a little heart Bryce was born with an intact atrial septum & HLHS. Success rate is not the same as a child born with only HLHS.
Awareness Article 1999 - Mother uses web to raise awareness for little hearts patients A 1999 newspaper article which explains the birth of Little Hearts Pictures of HOPE.
Awareness Article 2006 - CHD survivor offers hope One correction to article. The oldest HLHS survivor that Little Hearts is aware of was born 10/9/80. The oldest HLHS survivor who’s a member of Little Hearts was born March 1985!
| | Beating heart grown in U of M lab
Bicuspid Valve Inspirational Story A junior in H.S. is diagnosed with a bicuspid aortic valve. After surgery (Ross Procedure), ’is the top seed from the Class3A Great St. Helens League in the 100 and 200 meter dashes’ this year.
Boston Globe - MIT grows beating heart tissue
Boston Globe - Baby Steps One member’s story reported in the Boston Globe newspaper.
Please feel free to email Little Hearts for a copy of the national survey that was published in American Journal of Cardiology.
Boston Globe - Childhood heart defects cause trouble years later
Boston Globe - A medical first helps baby girl Please note that this story is about a baby diagnosed with HLHS with an intact septum. This combination has a lower survival rate than the ’average’ HLHS case.
CBS News - Mismatched Hearts Saved Infant Lives
Columbus Children’s - Domino Transplant Domino heart transplant occurs when one patient undergoes a heart-lung transplant and his/her heart is given to a second heart transplant recipient.
Congenital Heart Defects increasing among IVF twins Here’s a press release Yale School of Medicine researchers.
Detecting heart defects in utero
Exercise Helps Children with Congenital Heart Defects
FDA approves Cryolife heart valve ’Anderson, CryoLife’s president and chief executive officer. ’[It] may also be a good option for patients who have undergone valve replacement surgery as young children, but may require another valve replacement as they’ve grown into adulthood.’
Fontan Study Results by the Pediatric Heart Network Many members participated in the Fontan study through their child’s hospital. The study has been completed and the results are online.
Fox News - Human Bladders regenerated in labs US Scientists have successfully implanted bladders grown in the laboratory from patients’ own cells into people with bladder disease. The team is now working to grow organs including hearts using the technique.
Heart Smart Program The Business Education Sports Television Team is offering ’Heart Smart Program’ for $65.00 for the students participating in sports at Henry Court High School of McDonough, GA.
Magnetic resonance imagining (MRI) Fetal Heart
| | Medical News: Heart Defects in newborns linked to brain abnormalities The brains of full-term infants with congenital heart disease look like those of premature babies, researchers here said.
Delays may be a result of the brain abnormality and not a result of the open heart surgery.
Medical News Today - Screen siblings, parents of infants with severe abnormalities
New Warning Issued on Paxil
New York Metro - Small Miracles
Proper prenatal care can reduce birth defects
Preparing a Child for Surgery
Saving a Broken Heart On 12/7/02, Dateline NBC filmed 30 of our oldest Little Hearts members with HLHS swimming and having fun at an indoor pool. This show aired 8/22/03.
Screening tests for newborns Doctors in Tacoma are hoping that a test for newborns will help them find and correct a congenital heart defect.
Science Daily: For Babies with Heart Defects, Death Risk is far Lower at most Experienced Hospitals Each year, thousands of babies are born with severe heart defects that must be operated on within days or weeks of their birth. And though the odds for these infants are much better now than they were even 10 years ago, a new study suggests that there may be a way to give them an even better chance at living: Get them to the hospitals that are the most experienced at handling such cases.
Signs of heart defects in young athletes ignored
Stems Cells used to repair fetal defect
The Smallest Patient Family from Washington travel to Boston, MA for fetal intervention for their unborn baby
STS: Percutaneous Pulmonary Stents to Remedy Stenosis in Repaired Valves Medical News from STS: Society of Thoracic Surgeons Meeting. ’The valve is constructed from a bovine vein which is sutured inside a balloon made of expandable alloy stent, and deployed to the pulmonary vein via a femoral or jugular vein, in a technique developed by NuMed. The device is getting investigational use in the U.S. at Miami Children’s, Children’s Hospital in Boston, and Morgan Stanley Hospital at Columbia in New York.’
Ultrasound Gives Unique View Of Unborn Fetuses
Valproate linked to high birth defect rates
Washington Post - Infant heart, the size of a walnut, rebuilt and running Dr. Richard Jonas is featured in this article
Washington Post - Heart Valves Grown from Womb Fluid Cells
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