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CHD UK

I am here for Friends and Networking

About Me

Click on THIS LINK to help raise money for the South West Children's Heart Circle
[Disclaimer] I am not a medical personal & do not intend to take away from your physicians advice. I am only here to help raise awareness and educate & inform through my life experience.
This page will be a replica of the one on Facebook. I have decided to have two going because I will be able to reach out to more people this way due to personal preference to which site you use.
Firstly I would like to say that I have TGA (Transposition of the Great Arteries) and I am an Adult who has survived CHD (Congenital Heart Defects) from childhood which is why I am doing this group.CHD is welcome to join this group, as is anyone who doesn't but would like to show their support. It is not soley for the UK as I would like to help as many people as possible.
One the aims of this group is to promote the need for testing prior to birth.
There are many forms of Congenital Heart Defects including:
· Aortic Stenosis
· Atrial Septal Defect
· Atrio-ventricular Septal Defect
· Cardiomyopathy
· Coarctation of the Aorta
· Complex Transposition of the Great Arteries
· Congenitally corrected Transposition of the Great Arteries
· Ebstein’s Anomaly
· Eisenmenger Syndrome
· Hypoplastic Left Heart Syndrome (HLHS)
· Hypoplastic Right Heart Syndrome (HRHS)
· Persistant Ductus Arteriosis
· Pulmonary Stenosis
· Tetralogy of Fallot
· Total Anomalous Pulmonary Venous Connection
· Transposition of the Great Arteries
· Ticuspid Atresia
· Truncus Ateriosus
· Ventricular Septal Defect
The abnormality of the heart is similar in everyone who has a CHD, but each person is unique and so is affected differently.
Various procedures are used to help repair the heart to prevent the need for surgery but not enough is being done in the UK to raise awareness of heart problems.
You can find out more about Congenital Heart Defects here by clicking on the link below. Babies are still dying from CHDs. If they were given an echocardiogram (a monitor of the heart, also known as an ECG) as soon as they were born then these problesm could be detected sooner and perhaps more could be done to help.
Please help...WARNING: This video is quite sad, so if you don't want to be upset by it, don't watch it.
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My Interests

Congenital Heart Defects, also known as CHD's are the #1 birth defect in UK affecting 8/1000 live births, this does not count all the children lost in pregnancy to CHD's (1)
There are 35 medically recognized CHD's a few are already mentioned to the right of this..
CHD's are the #1 cause of DEATH from a birth defect, killing twice as many children as cancer every year.
Congenital Heart Defects are not always found during pregnancy or at birth, many are not found till childhood, adolescence, adulthood, or after death when it is to late.
Many Dr's believe that CHD's are genetic, although most people know nothing of Heart Defects till they have a child born with one.
New studies are showing that Painkillers and Antidepressants taking before and during pregnancy can raise the risk of having a CHD child.
CHD's can not be cured, the heart must be monitored throughout life. Most will need multiple open heart surgeries, some may even need a heart transplant.
Babies born with CHD's may need their first open heart surgery at just a few hours or days old.
It has been estimated thatt there are currently 250,000 adults with CHD in the UK, approximately 1,000,000 in the US and similar numbers in proportional terms in Europe and the rest of the world. (2)
If you don't know someone with a CHD sooner or later you will !

References:
(1) Dr vonder muhill is a joint Royal Brompton-University of Toronto fellow in Adult Congenital Heart Disease/Defect.
(2) Webb GD and Williams RG (2001) 32nd Bethesda Conference: care of the adult with congenital heart disease. J Am Coll Cardiol 37: 1161-1198

Music:

The Faces behind CHD


You could walk straight past any one of us (from this slideshow) in the street and you wouldn't realise we have a heart defect

Books:

Please Pray 4 My Brother Peter Tucci,CHD Survivor
Click TO SIGN PETITION " ..400 HEIGHT=90 BORDER=0 Copy and Paste Codes below: COPY AND PASTE " ..400 HEIGHT=90 BORDER=0

Heroes:

I think this poem represents alot of people whether you have CHD or Cancer
The Oak Tree
A mighty wind blew night and day. It stole the oak tree's leaves away, Then snapped its boughs and pulled its bark until the oak was tired and stark.
But still the oak tree held its ground while other trees fell all around.
The weary wind gave up and spoke, "How can you still be standing, Oak?"
The oak tree said, "I know that you can break each branch of mine in two,carry every leaf away, shake my limbs, and make me sway.
But I have roots stretched in the earth, growing stronger since my birth.
You'll never touch them, for you see, they are the deepest part of me.
Until today, I wasn't sure of just how much I could endure.
But now I've found, with thanks to you, I'm stronger than I ever knew."
Thanks to Angelina for sending me this poem. I also have a mug in the UK with my name on it which means Oak Tree :-)
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My Blog

The Published Article that I wrote


Posted by CHD UK on Thu, 24 Apr 2008 12:31:00 PST

What I wrote for an article that may be published in the GUCH Magazine

To all who do not know what CHD stands for. It does not mean a middle aged/old person with Coronary Heart Disease. It means Congenital Heart Defect and Congenital means 'born with'.Congenital Heart De...
Posted by CHD UK on Sat, 26 Jan 2008 02:23:00 PST

Raising Money for GUCH PA

I have a friend who is raising money for the GUCH PA (Grown up with Congenital Heart Patients Association). This is charity that published my article in their latest magazine and I thought I would hel...
Posted by CHD UK on Tue, 22 Apr 2008 12:41:00 PST

Thousands of Survivors of Congenital Heart Defects Facing Specialist Shortage

Newswise - Born with a serious congenital heart defect that requires regular medical check ups, Vanessa Mukite wasn't prepared for the dilemma she faced when she entered adulthood. Like thousands of ...
Posted by CHD UK on Sat, 19 Apr 2008 05:33:00 PST

Tiny reasons to expand heart scans

Mar 17 2008 by Our Correspondent, Western Mail Hundreds of babies are born every year with often life-threatening heart defects, but conventional pregnancy scans do not detect many of thes...
Posted by CHD UK on Sat, 19 Apr 2008 05:21:00 PST

Mum says all babies should have heart check

This article was published in Helen's local newspaper in the UKThe Warrington GuardianAS her son recovers from a life-saving heart operation, one mother is urging everyone in the town to sign a petiti...
Posted by CHD UK on Sat, 19 Apr 2008 03:45:00 PST

Smoking Linked to Defects

Before you read the 2 ARTICLES below. I would like to say something: My mum has never smoked, so I don't believe the story.  I bet there are lot of people out there who have got CHD and their ...
Posted by CHD UK on Mon, 14 Apr 2008 05:49:00 PST

CHD in the BRITISH NEWS

Kerry Card, 27, was delighted when she fell pregnant with her third child and was expecting a smooth pregnancy. But at 20 weeks she was given some dramatic, heart-breaking news&   MAIN: I star...
Posted by CHD UK on Thu, 10 Apr 2008 03:01:00 PST

NEW CHD STATISTICS

As  most of you are aware the statistics for babies being born with CHD is 1 in 125.  It has now come to light that that statisitc is no longer relevant.The new statistic is 1 in 85 babies a...
Posted by CHD UK on Sun, 10 Feb 2008 04:38:00 PST

Amelias Story

Amelia’s Mother, Sam has given me permission to repost Amelia’s story on here so that if there is anyone out there who are able to give her any advice to contact her (contact details at th...
Posted by CHD UK on Sat, 05 Apr 2008 05:27:00 PST