CHD-UK©

Educating and Raising Awareness of Congenital Heart Defects
Home
About Us
What is CHD (Congenital H
Types of CHD and Operatio
Related Issues & Informat
Heart2Hearts Social Netwo
Contact Us
Personal Stories
List of All the Personal
Heart Transplant Recipien
Desiree versus HOCM
Louise and Co-arctation o
Thomas David Moore and Hy
Isaac Pry with Hypoplasti
Ezekiel Timothy Bruce - S
Mummy's Tale of (TGA) a b
Christopher with HRHS, VS
Zoe living with TGA after
Dounya and Atrioventricul
Stuart Watson with TGA aw
Helen Howarth's Story of
Mother and Son with Tetra
Jeni Busta HLHS Survivor
Victor living with TGA
Kate with dextro-TGA
Hilary living with TGA an
Sienna and HRHS, TGA and
Cordelia Griffin with TGA
Kurtis Cunningham and Wil
Charile - TGA and VSD
Emily-Jayne's CHD Story
Mother with 2 CHD childre
Rhys with four different
Tiana with Mitral Regurgi
Jeni Busta's Beginnings o
Heart of a Father
Nicole Borek with Tetralo
Stuart Watson after Heart
Charlie with Pulmonary At
Rob Ward - Life with Coar
Fathers daughter born wit
A heart mums letter to he
David Watkins
Cordelia and TGA
Ethan with Transpositiona
Isla-Rose and Dilated Car
Father and Daughter with
Thomas Ellis living with
What CHD Awareness to A M
Christopher Pena with lef
Iolan's Surgery Story
Colin - A Sweet Angel
Nisha Van Wyk an adult bo
Jacob D Thorley with Tetr
Harvey Castel-Nuovo born
Aaron's Life Journey...s
Olivia Ayris with Mitral
Xavier’s Heart
Trevor Christopher with T
Jessica Goffard living wi
Riley with Transposition
Tristan with Hypoplastic
Tyler Philip Kingston wit
Joshua Mark Kingston with
Alissa Grimes with Coarta
Tanesha's Fight with Comp
Niamh with Coartaction of
Logan has Pulmonary Atres
Caylen with multpile CHD'
Glebby living with Willia
Joel's Story of life with
Ellie M O'Neills Story: P
My miracle, Ben with Coar
Liam Matthew Hackett with
Zoe Chambers and Cardiomy
Luke with a complex colle
Joe Beechey with Aortic V
Catherine living with Tru
Our Amazing Grace
Yasmin Southwood and Tetr
Madilyn Alivia Gettis bor
Lauren Celeskeys CHD Jour
Alejo and Stenosis of the
CHD Angels: A place of re
The ABC's of Congenital H
CHD Research
Organ Donation - Transpla
Raise Awareness
E-Newsletter
Fundraising Events
Publications
Books related to congenit
CHD-UK's Flyers, Leaflets
Merchandise
Supported by
Site Map
My Miracle: Ben with Coarctation of the Aorta (CoA), Bicuspid Valve, Aortic Stenosis and Ventricular Septal Defect(VSD)
England


I believe in miracles because I have one, he was born at the beginning of July 2008, five weeks early. However, just 2 weeks before I was offered another termination, I’d been asked at every scan I'd gone to and I went to a lot.  It was when I went for my 12 week scan that they discovered he had heart defects.
 
Two years before conceiving Ben I was told the likelihood of me getting pregnant again was very slim!

When the doctors found out that I was pregnant, they gave me odds of 100,000 to 1 that I could carry him past 12 weeks mark.  I had already lost three in previous years (as I have Lupus and it sees the baby as a parasite).  When I reached 12 weeks the odds got better down to 10,000 - 1.

The day Ben was born was quite traumatic to say the least, his dad and I had split up that morning, and I had gone for a lie down which is  when my waters broke.  The nerves kicked in, would I make it to St Thomas’ in time, would he survive.  I did and Ben did.  They worked on him in the corner of the room and when he finally let out a little moan I was overjoyed, until that moment time had stood still.

He was taken to NICU, it was quite scary to see him hooked up to all kinds of bleeping machines, scarier still when they start going off, but the staff there were absolutely fantastic, they explained everything to me and I felt that he was in the safest hands in the world.

Ben was born with Coarctation of the Aorta (CoA), Bicuspid Valve, Aortic Stenosis, a small hole in heart (ventricular septal defect [VSD]), a 4 in 6 murmur.  I was told he was a rare case which makes him even more of a miracle to me.

At 11 days old he was taken down to theatre for surgery, the risks were the same if he didn’t have surgery, I’m not religious but I sat in that corridor and prayed.  They wheeled him past me 5 hours later on his way to PICU, feeling so relieved that he had made it.   I am thankful to his surgeon Mr Austin, without him Ben wouldn’t be here today.

Bens now 21 months, he will need further help and has regular check ups.  There has been a few scary moments but if you saw him you wouldn’t believe anything was wrong, he has his ‘angel wing scar’ that goes from under hiss arm to the centre of his back.

His Ventricular Septal Defect closed by itself when Ben was 14 months old, amazing, just like my little miracle Ben.

Wrote by Sandra James
May 2010

Sandra James has kindly given CHD-UK permission to use the photographs on this page.