Little Hearts offers stories of survival and hope from individuals who live and thrive with a congenital heart defect CHD such as HLHS, VSD, ORV, DILV and TGA.

Click on the links at right to view some of our members stories. These were created by members who have a child born with a congenital heart defect.

It is our intention that these sites offer hope, inspiration and support to those who view them.

To learn more about the different types of heart defects, visit our CHD facts page.

HAS YOUR HEARTCHILD BEEN ASKED TO CUT BACK ON SPORTS - hear how some of our members handled this

THE WINNER OF THE 2009 ARTWORK CONTEST FOR THE 13TH ANNUAL PICNIC T-SHIRT IS ... Many thanks to the very talented children in Little Hearts and sending in their WONDERFUL artwork!

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

Aortic Stenosis - Brandon, born 2009

Atrial Septal Defect - Gabriella, born 2003

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

Cardiomyopathy, Dilated & Complete Heart Block - Elise, born 2008

Cardiomyopathy & Complete Heart Block, Sara - born 2005

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 - Autumn, born 2008

DILV - Charlie, born 2008

DILV, PS, TGA - Faith, born 2005

DILV, L-TGA, PS, VSD - Jack, born 2008

DILV, PS - Kimberly, born 1960

Discontinuous Pulmonary Artery, VSD, ASD, PS - Anjali, born 2008

DORV - Alicia, born 1992

DORV- Ashlyn, born 2008

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, PDA, WPW - Laura , born 1998

DORV, VSD - Marin, born 2007

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 - David/twin, born 2005

HLHS - Dezo, born 2006

HLHS - Dylan, born 2004

HLHS - Eloise, born 2006

HLHS - Emily, born 2005

HLHS - Eva, born 2007

HLHS - Hannah, born 2005

Awareness Week 2009 - Letter to Editor

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 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 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 2006 - Making Strides Little Hearts member, Angela, tells her daughter’s story (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 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 - 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.

Cord Blood Stem Cells May Help Repair Babies’ Heart Defects ’Cardiologists at the University Hospital of Munich say they are 5 years to 7 years away from transplanting new heart valves into children with faulty hearts, derived from the children’s own cord blood. The researchers reported the findings today at the annual meeting of the American Heart Association.’

Detecting heart defects in utero

Diagnosis of congenital heart disease still frequently missed or delayed Infant deaths due to missed or delayed diagnosis of congenital heart disease (heart defects present at birth) continue to be a significant problem, say researchers in the October 2008 issue of Archives of Pediatrics and Adolescent Medicine. ’Congenital heart disease affects 8 to 12 per 1000 live-born infants and is one of the most common and serious types of birth defects,’ writes Dr. Ruey-Kang R. Chang, of UCLA Medical Center. ’Many infants born with congenital heart disease are discharged from the hospital nursery with their conditions undiagnosed.’

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.’

Finding the ’Lost Survivors’ of Congenital Heart Defects ’Unlike Wong, most of the one million U.S. adults who have life-threatening heart disease from their congenital heart conditions are ’lost,’ doctors say, because they still think the surgery they had as children was all they needed.’

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.

’His Heart Beats for Football’ Cobee, born 1991 with Tetralogy of Fallot played football in High School

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

No drop in IQ seen after bypass for child heart surgery ’The use of cardiopulmonary bypass does not cause short-term neurological problems in children and teenagers after surgery for less complex heart defects, according to pediatric researchers. The new finding contrasts favorably with previous studies that showed adverse neurological effects after newborn surgery for more complex heart conditions.’

Preparing a Child for Surgery

Proper prenatal care can reduce birth defects

Researchers uncover genetic basic for some birth defects ’The research, titled ’Mouse and human phenotypes indicate a critical conserved role for ERK2 signaling in neural crest development’ is published in the November 10 issue of the Proceedings of the National Academy of Sciences of the United States of America.’

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

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.’

The Smallest Patient Family from Washington travel to Boston, MA for fetal intervention for their unborn baby

Ultrasound Gives Unique View Of Unborn Fetuses

Valproate linked to high birth defect rates

Washington Post - Heart Valves Grown from Womb Fluid Cells

Washington Post - Infant heart, the size of a walnut, rebuilt and running Dr. Richard Jonas is featured in this article