Personal Stories

Stories on this site are from ALL around the World (from New Zealand, Australia, USA to Europe).

(This was said to CHD-UK in regard to the personal stories pages: I think story sharing helps us CHD parents validate our feelings and gives us the opportunity to feel normal. No one understands what it’s like to have a sick child or to be a CHD survivor unless you’ve been there yourself.)

Adult CHD Survivor Stories

Aaron Knox – A Heart Transplant Recipient
Bill Coon – A Memoir of Survival (Hypoplastic Left Heart Syndrome)
Carol’s story about living with Biscuspid Valve
Christy and TJ (Mother and Son) living with Tetralogy of Fallot
Emily-Jayne’s CoHD Story living with Ventricular Septal Defect (VSD)
Desiree versus Hyotrophic Obstuctive Cardimyopathy
Elizabeth Berry diagnosed with a CHD at the AGE of 25
Hilary living with TGA and minor Stenosis of the aorta
Jacqueline Doré and her inspirational life with Tetralogy of Fallot
Jeni Busta a HLHS Survivor who is Happy with Half a Heart
Jody Ashcraft – A Husbands Perspective
Kate with dextro-TGA
Kurtis Cunningham and Williams syndrome
Louise and Coarctation of the Aorta
Mildred Chan living with Right Ventricular Mid-chamber Obstruction
Nicole Borek with Tetralogy of Fallots
Rob Ward – Life with Coarctation of the Aorta
Sarah McKain growing up with Truncus Arteriosus (Full Interview)
Sophie Henton: My Life with Tetralogy of Fallots
Stuart Watson with Transposition of the Great Arteries (TGA) – Awaiting a Heart Transplant
Stuart Watson – Heart Transplant
Val Monk: Cycling 1000 miles to Work
Victor living with TGA
Yasmin Southwood and Tetralogy of Fallot
Zoe living with Transposition of the Great Arteries (TGA) after the Senning Procedure

Parent and Children’s Stories

A Father’s story of his now grown up daughter, Alex Miller with Single Ventricle, Pulmonary Stenosis and Transposition of the Great Arteries
Alejo and Stenosis of the Aorta / Alejo y su Estenosis aórtica
Charlie Fletcher with Pulmonary Atresia with Ventricular Septal Defect (VSD)
Charile Woods born with Transposition of the Great Arteries (TGA) and a Straddling Ventricular Septal Defect (VSD)
Christian Kai – My Miracle – under construction
Christopher Clynch with Hypoplastic Right Heart Syndrome (HRHS), Ventricular Septal Defect (VSD) and Transposition of the Great Arteries (TGA)
Cordelia Griffin with TGA – the story so far
Dounya and Atrio Ventricular Septal Defect (AVSD)
Ezekiel Timothy Bruce (Sept 2007 – Oct 2007) and Coarctation of the Aorta and Ventricular Septal Defect
Harry Edward Redfearn – Obstructive Hypotrophic Cardiomyopathy (HCM)
Helen Howarth’s story of being pregnant with Alex, with all the emotions that she went through.
Helen Howarth’ story after Alex was born to date – under construction
Isaac Pry and Hypoplastic Left Heart Syndrome
A heart mums letter to her 7 year old boy
Jenni Busta -Heart of a Father wrote by her Father
Jeni Busta’s Beginnings of Life with HLHS by Jeni’s Mother
Jessica Collacott with Exomphalos and VSDs (under Multi-Function Patient monitor)
 Joshua living with not only FOUR CHD’s but also CHARGE syndrome
Madilyn Alivia Gettis born with Tricuspid Atresia
Mason with Coarctation of the Aorta and FOUR VSDs (under Multi-Function Patient Monitor)
Mother’s story of having two children with a CHD but not the same CHD (Thomas has Tetralogy of Fallot and Jonathan has TGA, DORV and Pulmonary Atresia)
Mum To Be unborn diagnosed with AVSD (under Multi-Function Patient Monitor)
Mummy’s Tale of (TGA) a blue baby called Thea
Rhys born with 4 different CHD’s which are Tricuspid and Pulmonary Valve defect, Hypoplastic right ventricle (HRHS) and an Atrial Septal Defect (ASD)
Sienna and HRHS, TGA and VSD
Susan, a mother writes about her 26 year old (TGA, VSD and Pulmonary Stenosis)
Tiana with Alcapa (Anomalous Left Coronary Atery from the Pulmonary Artery) and Mitral Regurgitation

28 Days = 28 Real Life CHD Stories (CHD Awareness February 2010)

David Watkins – Ironman Life – Racing with a Big Heart
Cordelia Griffin with TGA – Update
Ethan with multiple CHD’s
Isla-Rose Our Angel who was born with Dilated Cardiomyopathy and Valve Regurgitation
Father and Daughter with Tetralogy of Fallots
Thomas Ellis with Transposition of the Great Arteries, Ventricular Septal Defect and Pulmonary Stenosis
What Congenital Heart Defect Awareness to ME Means…
Christopher Pena with left ventricular non-compaction Cardiomyopathy (LVC)
Iolan’s Surgery Story
Colin – A Sweet Angel
Nisha Van Wyk an adult born with Transposition of the Great Arteries
Jacob D Thorley with Tetralogy of Fallots (TOF)
Harvey Castel-Nuovo born with complex Pulmonary Atresia with intact ventricular septum, an acutely hypo plastic right ventricle and a coronary artery fistula
Aaron’s Journey – so far (Transplant)
Olivia Ayris with Mitral Atresia
Xavier’s Heart – Hypoplastic Left Heart Syndrome
Trevor Christopher – Truncus Arteriosus with Hypoplastic Arch and VSD
Jessica Goffard living with Tricuspid Atresia with Ventricula Septal Defect, Atrial Septal Defect and Mitral Valve Prolapse.
Riley with Transposition of the Great Arteries (TGA)
Tristan Card with Hypoplastic Left Heart Syndrome
Tyler Philip Kingston – Double right sided Ventricular Septum Defect
Joshua Mark Kingston with Tetrology of Fallot, Pulmonary Atresia with Ventricular Setpum Defect (VSD) and DiGeorge syndrome (22q11)
Alissa Grimes with Coarctation of the Aorta (CoA) and Transposition of the Great Arteries (TGA)
Tanesha’s Fight with Complete Atrioventricular Septal Defect (AVSD)
Niamh with Coarctation of the Aorta (CoA) and Left Atrial Isomerism (LAI)
Logan has Pulmonary Atresia with Ventricular Setpal Defect (VSD), Right Aortic, Arch, MACPAS and 22q11 (DiGeorge Syndrome)
Caylen with Heterotaxy, Dextrocardia, Atrial Ventricular Discordance, Sick Sinus Node syndrome, Double Right Outlet, Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) and Pulmonary Stenosis, as well as several other minor defects.
Glebby living with William’s Syndrome

9 Days = 9 Real Life European CHD Stories (European CHD Awareness Week May 2010)

 

Joel’s Story – A Life with Aortic Stenosis
Ellie M O’Neill’s Story: Pulmonary Atresia
My miracle: Ben with Coarctation of the Aorta, Bicuspid Valve, Aortic Stenosis, VSD
Liam M Hackett with Mitral Stenosis
Zoe Chambers and Cardiomyopathy
Luke with Complex Collection of CHD’s
Joe Beechey with Aortic Valve Astresia, ASD, VSD, and hyperplastic aortic arch
Catherine living with Truncus Arteriosus
Our Amazing Grace who was born with HLHS