After getting over the initial shock of such news, we immediately
turned to the only place we could think of - the internet. We found an
informative site called The Children's Health Information Network
(TCHIN). There we found invaluable information, links, and other
parents who were dealing with the same thing. We also found that this defect
was anything but "uncommon". We were surprised to find that so many children
were affected by this particular heart defect and even more surprised to find
out the large amount of children affected by the other types of heart defects,
despite this, most of the information available to people still labels heart
defects as "uncommon".
After many discussions with health care professionals, fellow
"heart parents", and our family, we began to focus in on the decision
to pursue a heart transplant for our son, Logan. After many tears, much
soul searching, and praying we moved to Loma Linda, California where
Logan would be under the care of the wonderful staff at Loma Linda
University Children's Hospital's.
He was born on December 7, 1998; sadly ironic, he appeared to be the
healthiest baby I had given birth to, so big and chubby and pink
What a bittersweet day that was for our family. Joyful that he had
finally "arrived", yet scared beyond imagination at what lay ahead for
him. He struggled with many problems and amazed us and his doctors and
nurses with his will to live and overcome many obstacles. For two days
we stood by his side, praying he would get the heart he so desperately
needed. His sick little heart could not take any more and he was soon
too critical to stay on the heart transplant list. Our little hero
became an angel just two short days after his birth.
He was with us for such a short time but the courage, strength, spirit,
and unconditional love that he brought to us, and countless others,
will live on forever.
We are most grateful to the Neonatal Intensive Care Unit (in particular
Dr. Ricardo Peverini, Dr. Chinna and Colleen Emerson) for the loving,
dedicated care they gave Logan; the Transplant Team members, Joyce
Johnston and Mike Cervantes; and the Chaplin, Jennifer Elliot. They
touched our lives beyond words.
Since our son's death we are trying to reach out to other parents
(and other family members) who are affected by CHD's. In doing so, we are
making sure that Logan's brief life and tragic death will not be in
vain. We realize we were "lucky" to have had an early diagnosis; to have had
the time to prepare. Too many babies go undiagnosed until after birth when they
become critically ill or until it's too late to save them. Continued research,
more accurate and timely diagnosis, more research money, and better
educational and support systems are needed.
We have created this page and will continue our work to promote
awareness for Congenital Heart Defects, in the name of Logan Gene Vaught
and the countless other children affected by CHD's, both here and in
Heaven.
Please take a moment to read through the names of these heroes and
say a prayer for the families who love them.
With hope,
Desiree Vaught
mom to a CHD ^i^ Logan Vaught 12/ 07/ 98 ~ 12/ 09/98 HLHS
We want people to know that CHD's are the number one birth defect.
We want people to know that funding is needed for research to prevent/cure heart defects and to further the quality of life for those living with CHD's.
We want to help promote organ donation ~ everyone has a chance to save or change a life by donating their organs ~ help give the greatest gift of all ~ life!
We want to let people in the CHD community know that there are resources available to them and to help broaden these resources.
We want anyone affected by heart defects -- parents, patients, siblings, grandparents, friends, and extended family -- to know that there is support available both online and offline.
We want to help the precious babies, children and the adults who are faced with CHD's have a better chance at a long, healthy and much deserved life.
Already, several states and cities have signed proclamations making February 14, 2001 as "A Day for Hearts: Congenital Heart Defect Awareness Day". So, please join us in our efforts to reach these goals. In loving memory of all the children and adults who have died from CHD's ~ and those who mourn them; in tribute to all the precious children and adults still battling CHD's and to those who help them; in tribute to the compassionate professionals who dedicate their lives to helping them ~ join us on February 14, 2001 and help us celebrate this day of hearts.
WHEREAS, Congenital Heart Defects are among the most common birth
defects and are the leading cause of defect related deaths; and
WHEREAS, with the increased familiarity of CHD, more diagnoses are
being made of what was not long ago thought to be an extremely rare
and irreparable disorder; and
WHEREAS, too many babies and children born with CHD's continued to die
due to the severity of the defect, a lack of timely detection, a lack of
donor hearts and medical intervention failure; and
WHEREAS, more than 32,000 infants are born each year with heart defects
in the United States; and
WHEREAS, numerous professionals are researching CHD in order to more
accurately describe its origin, physical signs, symptoms and surgical options;
NOW, THEREFORE I, KENNY C. GUINN, GOVERNOR OF THE STATE OF NEVADA
do hereby proclaim February 14, 2001 as
A DAY FOR HEARTS
CONGENITAL HEART DEFECT AWARENESS DAY
Joseph William Schultz
07/22/98 ~ 12/9/98 HLHS
Anna Renee Dietrich
09/30/98 ~ 10/10/98 HLHS
Christopher Ronald Faller
05/07/90 ~ 03/24/98 Severe Restrictive Cardiomopathy
And Secondary Pulmonary Hypertension
Piggyback Heart Transplant on 10/7-8/97
Hope Elise Quigley
4/24/00 ~ 9/11/00 Hypolastic Left Heart, Pulmonary Stenosis
AV Canal Defect, Double Outlet Right Ventricle, Total Anomalous Venous
Return, Bilateral SVC's, Dextracardia, and born without a Spleen
Mandy Lee Bender
4/21/95 ~ 5/31/95 HLHS
Rachel Marie Lund
01/12/99 ~ 01/15/99 Endocardial Fibro Elastosis
Taylor Ryan Kivisto
4/10/97 ~ 4/11/97 Transposition of Great Arteries
Matthew Charles Barr
07/01/97 ~ 07/09/97 HLHS
Devon Ray Coon
03/23/97 ~ 03/24/97 TGA and Lymphactasia
Hope Teresa Rochelle DiDomenicantonio
06/07/00 ~ 06/18/00 HLHS
Corey Joseph Gindling
12/3/97 ~ 10/21/98 HLHS
Satiana Priya Landis
6/29/00 ~ 07/05/00 HLHS
Devin Lael Dorogi
5/3/97 ~ 7/26/97 HLHS and VCFS
Zoe Marie Gibbs
2/22/99 ~ 9/01/99 TAPVR
James Peter Magill
07/05/00 ~ 7/11/00 HLHS
Zachary Wayne Brooks
6/02/99 ~ 11/30/99 AV Canal Defect, Coarctation of the Aorta
Nolan John Shimchick
3/1/00 ~ 3/29/00 HLHS
Natalie Cooper Ciepienlinski
6/18/00 ~ 6/23/00 HLHS
Jesse Peter Landers
7/6/00 ~ 10/2/00 HLHS, Blood Clot
Lane McKinnon Fox
5/8/00 ~ 5/28/00 HLHS
Leslie Sue Large
4/18/99 ~ 6/28/00 Tetrology of Fallot with Absent Pulmonary Valve
Jeremy Ryan Noble
11/20/98 ~ 9/6/00 HLHS, PAVPR
Sherri Lynn Poe
5/26/67 ~ 6/17/67 Transposition of the Great Vessels
Kyle Allen Poe
3/15/69 ~ 11/22/95 Corrected Transposition of the Great Vessels,
3rd degree Heart Block, PDA, VSD, Ebsteins Anomoly
Gabriel James Cochran
12/17/99 ~ 12/22/99 HLHS
Garrett Allen Carpenter
060/4/99 ~ 06/29/00 L-TGA (Congenitally Corrected Transposition), Complete
Heart Block, Pacemaker Implanted on 6/7/99 and 5/19/00, VSD, Coarctation of the Aorta (repaired 6/7/99)
Julia May Folchi
12/21/99 ~ 01/18/00 HLHS, Shone's Complex
Derek Michael Pederson
5/22/00-9/13/00 from complications of HLHS
Alexander Neal Balding
11/30/20 ~ 01/17/01 HLHS
Hunter Reed Tharpe
11/27/99 ~ 12/01/99 Critical Aortic Stenosis, HLHS
Alexander James Patrick Kincaide Curran
09/14/00 ~ 11/04/00 HLHS
Chancellor Nicolas Middleton
05/15/99 ~ 06/15/99 HLHS
Alexander Diego
09/21/98 ~ 07/28/00 Acute Angle of Origin of Left Coronary Vessel
Emily Claire Schmidt
04/03/97 ~ 07/14/97 Shone's Complex
Alec Jon Omichinski
11/09/93 ~ 11/19/93 HLHS, Critical Aortic Stenosis
Andi Zintel
08/18/00 ~ 10/03/00 HLHS Fatal Arrythmia Complications
Daniel Christopher Wolfe
11/12/99 ~ 11/26/99 HLHS Not diagnosed until after his death
Briana Elizabeth Greco
02/14/97 to 03/02/97 HLHS
Benjamin John Boland
11/24/97 ~ 12/25/97 Severe Aortic Stenosis
Joshua Ian Truscott
10/11/00 ~ 16/11/00 HLHS
Bailey Ann
02/14/97 ~ 06/17/97 ASD, VSD, Left Pulmonary Vein Stenosis, Right Pulmonary
Vein Atresia, Pulmonary Hypertension
Benjamin Thomas von Eitzen
09/28/00 ~ 10/02/00 HLHS
Courtney Lynn Griffith
06/07/00 ~ 07/26/00 HLHS
Kevin Andrew (Andy) Barbee
06/05/85 ~ 06/15/85 PPHN, AV Canal, PDA
Benjamin Jean Eric Rimlinger
09/05/92 Became an Angel 9 hours later TAPVD, ASD
Hannah Elisabeth Eagan
07/20/98 ~ 12/30/98
Supravalvular Aortic Stenosis and Pulmonary and Branch Pulmonary Vein Stenosis
John Harold
02/23/95 ~ 12/15/95 Pulmonary Atresia
Lucy Ava Peters
08/03/00 ~ 10/01/00 HLHS
Anderson Lawrence Darley
04/06/00 ~ 05/23/00 Complete AV Canal and Right Ventricular Hypoplasia, Down Syndrome, Trisomy 21
Kaitlynn (Kaiti)Reid Smith DeWever
08/11/98 ~ 12/21/99 Malformation of the "fast pathway", Right Ventricular Enlargement,
Left Ventricular Hypertrophy, Hypoplasia of the Left Ventricular Papillary Muscles,
Fatal Cardiac Arythmia
Elizabeth Hannah (Ellie) Hughes
06/20/98 ~ 10/28/99 L-TGA
Nathan Frederick Burrows
12/25/97 ~ 02/22/98 HLHS
Thomas James Neil
died in utero 11/99 ~ born 01/12/00 Critical Aortic Stenosis
Sydney Allison Russell
06/02/99 ~ 08/03/99 Hypertrophic Cardiomyopathy
Rebecca Anne Gonyer
11/10/99 ~ 11/18/99 HLHS
Joshua David Gates
11/04/99 ~ 11/29/99 HLHS died while waiting for a heart
Maggie Rae Ritchie
06/28/00 ~ 10/17/00 TAPVR, Single Ventricle
Joshua Allen Menssen
05/31/99 ~ 06/08/99 HLHS
Micah Jack Edmund Arend
05/19/00 ~ 06/02/00 HLHS
Michaela Anne Gil
10/31/00 ~ 12/19/00 HLHS
Jacob Riley Bretthauer
08/01/97 HLHS Heart Transplant on 11/21/97
Timothy Roy Kivisto (brother to ^i^ Taylor Kivisto)
8/14/94 VSD (corrected) and PDA (Diagnosed on 10/3/95)
Alexander Guy Jaworski
08/11/94 HLHS
Gabriel Ellinghouse
05/24/99 HLHS
Benjamin David King
09/24/97 HLHS, Pacemaker
Angelo Nicholas Guerriere
03/02/99 HLHS
Jonah Robert Hoser
02/15/97 HLHS currently waiting for a heart
Jessica Nicole Lund (sister to ^i^ Rachel Lund)
06/15/00 PDA
Jeffrey Cameron
06/06/96 diagnosed HLHS on 6/15/96
Julia Elizabeth Wynn
12/19/97 HLHS, DIRV, PDD-NOS
Taylor Matisse Colvin
09/22/00 HLHS
Brock William Agee
12/16/99 HLHS
Andrew Joseph Rodebaugh
12/06/2000 HLHS
Lauren Esther Graham
8/30/00 HLHS with Intact Atrial Septum
Samantha Anne Sabell
10/9/99 HLHS
Christina Ashley Hayes
02/03/00 HLHS
Quinn Maxfield Keller
10/21/00 HLHS with Tricuspid Regurgitation
Amber Loney-Feagan
07/25/96 HLHS
Michael Aaron Cooper
04/28/95 HLHS
Ellen Reinsburrow
06/24/92 HLHS
Madeline Elise Cole
09/11/97 HLHS
Jonah Michael Van Eck
01/25/97 HLHS, COA
Raiden Anthony Helwig
08/01/2000 HLHS, Heart Transplant on 8/11/2000
Jarod Scott Davis
06/02/98 HLHS
Matthew Burton
09/17/99 HLHS
Courtney Stevens
09/04/95 HLHS, DORV, ASD, Pulmonary atresia, Other birth defects:Situs Inversus
Sabrina Lidia Tersigni
03/01/00 HLHS
Nicole Worsham
03/07/00 HLHS
Wade Bryant
09/18/93 HLHS
Megan Liberty Rathbun
09/29/00 TGA, arrhythmia
Larry Jordan Lambrecht
09/24/98 HLHS
Jared Raymond Turngren
01/16/99 HLHS
Garrett Keller
04/15/97 HLHS
Sema Rae
09/04/88 HLHS
Jaedin Price
12/08/98 HLHS
Mia Caroline Bergstrom
08/06/99 HLHS
Brett Thomas Leonard
02/18/00 HLHS
James Peter Crisp
10/03/00 HLHS
Austin Brian
10/22/98 TAPVR Not Diagnosed until 01/16/99
Charles L. Stanford,III (Chase)
05/19/97 HLHS
Timothy Gay
08/14/97 HLHS
Sarah Zoe Allen HLHS
12/26/99
Nicolas J. Santos
09/25/00 HLHS
Christopher Ryan Whitson
07/18/99 HLHS
Annika Murrell
06/23/97 HLHS and Heterotaxy
Kayla Marie Radel
10/20/99 HLHS
Jack Robert VonSosen
08/04/98 HLHS
Thomas R. Gracia II
08/10/00 HLHS
Shelly Lynn
11/05/96 HLHS, Heart Transplant on 10/01/00
Lorraine Keegan Leckrone
11/03/99 HLHS
Chandler James Burnell
07/24/96 HLHS
Cindy Matthews
07/04/95 HLHS, VSD, Mitral Valve Stenosis, COA, Bicuspid Aortic Valve
B'Elanna Concepcion Chiemara
01/16/01 TGA, VSD, Pulmonic Stenosis, PDA
Nicholas Briggs
01/28/98 Heterotaxy Syndrome with Asplenia, DORV (Double Outlet Right
Ventricle), Bilateral SVC, Interrupted IVC, PS, VSD, Common Atrium
Kevin "Elijah" Hernandez
07/05/00 HLHS, Regurgitating Tricuspid Valve, Coarc of the Aorta
Katie Zintel
06/08/98 Pulmonary Stenosis
Hunter Dreier
09/09/99 ASD
Earl Offenback III
04/02/00 HLHS
Skyler Blaize Carpenter
02/24/98 w/Tricuspid Dysplasia
Eric Baemayr
05/11/91 HLHS
Haley Michelle Dyer
10/08/93 HLRH Heart Transplant on 12/02/93
Victoria Rose Scoggins
03/31/83 Repaired Coarctation, PA Band, Tricuspid Atresia, ASD, VSD,
11 yrs. post Fontan, 6 stents, TCH
Anthony L Pugliese
04/28/1964 Single Ventricle Pulnomic Stenosis, Transposition of The Great Vessels
Renee Wirtz
07/15/68 DiGeorge Syndrome, Deletion of Choromozone Number 22q, VSD
Jeffrey Nelson Lund (Dad to ^i^ Rachel and Jessica)
09/30/65 VSD
Pins are $2.50 each (includes shipping!)
and can be purchased by sending a check
to:
Kids With Heart, NACHD, Inc
1578 Careful Drive
Green Bay, Wisconsin 54304
Credit Card orders accepted!
Call 1-800-538-5390
Now this day, will be special, in yet another way,
It's been proclaimed, in many states, CHD Awareness Day.
On this day we honor those born with their heart broken,
The world will know of their plight, silent throughts now spoken.
We will remember loved ones, lost to CHD.
In our souls and in our hearts, forever they will be.
To those who continue the fight each day we are filled with admiration,
Your courage, faith and love for life deserve this celebration.
We also want to recognize, honor and give praise,
To those who keep our hopes alive with their kind and caring ways.
The nurses, doctors, and researchers are part of this day too,
For many hearts that still beat on, we give our thanks to you.
A day of hearts it truly is, hearts of red and gold,
Now add to it a brand new symbol, another heart to hold.
Please remember on this day, those with hearts not perfect,
And everyone who loves someone, with a congenital heart defect.
by Dolly Lee
