Contact Us
Email
Kerry - hlhs.awareness@live.co.uk
Donna - donnaanddean@sky.com
MSN
We are now 
on MSN!! Do you have MSN? Would you like to chat to us live?
If you have MSN, Kerry is free from 6pm most nights, if its just for support, words, comfort... anything. HLHS Awareness UK is here to be your very first interactive CHD website - especially for CHD Mums, Dads, Families and anyone affected by CHD's.
If Kerry is offline on MSN, please feel free to send her or Donna and email and they will respond ASAP. Alternatively, use the contact form at the bottom of this page.
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What would you like to see on this website? All suggestions are welcome, for example, if you have any opinions, story's, questions then please do not hesitate to contact us.
All you have to do is fill in the form below and we will get back to you all very shortly :-)
Guestbook
Why not take a moment to sign our guestbook
We would love to hear your stories and see your pictures of your CHD warriors and angels
Here are some of the messages we recieve:
Message from Amelia Farrar:
As a mother to 2 healthy boys i am truly moved by the stories i have read and the pictures i have seen of the children and the parents
I could not imagine going through something like this, i worry when my boys get a sniffle...
I really hope and pray that people do start to get the message and that the goverment make people aware of CHD.
I wish you all the strength and love in the world.
Message from Karen Bacon:
l too was very blessed with healthy children and my heart goes out to all the families who were not as lucky.
l can't begin to imagine what they have & are going through.
l hope & pray that CHD gets all the recognition it needs & that the families are given all the love & strength they need to help them get through a very sad time in their lives.
Rest peacefully sweet little Angels ((HUGS))
Message from Tami Crum:
I do not forget to thank the Lord above for my 2 healthy children.I also do not forget to pray for all of you who have had to give there lil ones there wings.love,tami(Ohio)
Message from RuralGypsy (a msg from one of my youtube video's):
I am a 42 year old Congenital Heart Patient..
My defect is called D-Transposition of The Great Vessels. I am seeking all who have succeeded age 40 without a heart transplant.
I would like to know their success story, and the quality of life for which they have lived. I have been told, I am the oldest living, in the United States, with this particular Heart Defect. Is this true????
I accept any assistance available, in finding others like myself. Time is of the essence.
If anybody would like to get in touch with this lovely lady please email her on:
Message from Laura:
I would just like to say what a great job you are doing raising awareness of CHD. My daughter Mia had ASD (Atrial Septal Defect) and VSD (Ventricular Septal Defect) repair at 3 1/2 months old at the John Radcliff. She is now 15 months and in perfect health with no ongoing treatment required (thank god). I think that an echocardiogram should be compulsory at birth as Mia's defect was not picked up in the hospital I took mia to the doctors at 4 weeks old because of heavy breathing and we were sent home saying it was nothing to worry about because new borns have erratic breathing. As a new mum I trusted the opinion of the doctor but wasn't at all satisfied with the reason she gave for Mia breathing so heavy.I went back 4 days later to my personal doctor and demanded he check her over He couldn't feel a pulse in Mias' groin and said "he would get us an appointment with a Paediatrition in a week". Again, I wasn't happy and I said "if she needs to see another doctor I want to see one the same day". I got an appointment at the hospital and I can honestly say I ran all the way there. Once there they checked her over straight away, they then told us she had something wrong with her heart or lungs but they couldn't be sure. We were then sent for an x-ray which showed Mia's heart was enlarged. Then came the ECG (4 weeks too late if you ask me) that confirmed it. The next day Mia had an ultrasound to see exactly what was wrong. The outcome was Atrial Septal Defect (6mm) which the doctor's described as big and also Ventricular Septal Defect (8mm) which the doctors described as huge. Also her patent ductus was still open but that was of no concern. I couldn't believe that it had taken almost 5 weeks to diagnose Newborn babies have there HEARING CHECKED at just hours "I agree that it is important a child can hear right, but why on earth can they justify not checking on one of the child's major organs You can die from heart conditions and what percentage of children die because the can't hear properly? I think the echocardiogram should be compulsory for every child and I really admire you putting the message out there. Keep up the good work."
Laura and Mia xxxx
HLHS Awareness UK reply:
Thank you to Laura for giving us your support. We are so grateful and pleased that we are helping others and what a wonderful story. Thank you for sharing your thoughts and I am sure many agree with you however, it is strange that newborns can have hearing tests but not a simple scan of the body's main artery that keeps us alive hmmm??? If anyone would like to contact Laura you can email her at: thephreets@hotmail.com.
Message from Claire D:
Hi ya.
My son was born with Fallots tetralogy and my best mates daughter was born with HRHS. It's amazing how common heart defects are... but not amazing in a good way of couse lol. I just want to make some difference as people in general don't seem to think it is that common and often blame the mother, its like there is a stigma attached to it. Sorry for the brief message, it is getting late. Sometimes just to know that someone understands how you feel about it, someone who has gone through or is going through the sane makes the world of difference. x
Message from Edward F:
Hi Kerry
I just wanted to say we had a baby daughter in 1994 she was diagnosed with truncas arteiosis which is a vavle and artery missing out of the top of her heart omg it was such a shock for me as i always thought nature didn’t make sick babies well not in our family!
It really floored me, at that time was a workaholic with my biz.
Then went to Edinburgh sick kids when she was 6months old we had never had her home!
We got told she had a 50/50 survival rate! But i spoke with the aneasthesis (spellings poop!)
He told us that 12 hrs on heart by pass then the body begins to fail due to the machine purifying the blood im sure ya have heard all this before i ran out that office and found a corner in the hospital and curled up in a little ball crying like a baby (I used to be a hairy arsed biker smoked pot and partye’d hard!) as i was sooooooooo scared of loosing this wonderful little baby jesus im not a church goer but for the first time i spoke to god and told him please wave a magic wand over my beautiful baby & i wud give up everything i owned!
It has learned me that money and material things are worthless!
Anyway i’m ranting on here sorry she went through op how scary is that my ex partener and i walked about in a daze when she went under!
It was so scary the thought of loosing this precious bundle she came through with amazing speed but 7 months later took a turn for the worst!
We were down in England when she went limp on us, well we drove straight through the night i swear my heart was in my mouth as soon as we got into Aberdeen i phoned Foresterhill Hospital this was friday night the nurse refused to take her in?????????????????
So i calmly asked her for her full name and rank she asked why ?
I said if my daughter dies over the weekend i will hold ya personally responsible for her death!
So she was taken in and after inspection rushed into intensive care we had to weight again for another donor artery what a horrible position to be in we wish for donor but felt sad if some one lost their baby its not a nice place to be!
Anyway her skin graft on her heart blew up like a "balloon"
Wasn’t till she got donor art did we find out why this happened her body saturated the donor artery with Calcium and as the doctor said was like a bick pen when he removed it and lay it down!
If that skin graft had burst it was all over for Natasha!
Now she is a beautiful warm loving incredibly clever sensitive 14 yr old!
We are doting daughter and dad she just adores me and me her we were down in glasgow with the big check up and she passed with flying colours!
Her hearts working 80% and docs are happy considering 2 open heart Opps!
She helps out in Foresterhill with doctors training she gets 30quid for being a "patient" I got 50p for millage something wrong there! Lol
I would like to end this before i don’t bore the living day lights outa you i could talk for hrs about Natasha! I also have a son Nathan he’s 9 and they are wonderful together Tash has this wonderful mothering nature towards me and Nathan!
I hope and prey your son is healthy and most of all happy and loved with all his bro and sisters!
Life for me would be so sad without my sweet girl good luck!
Ed
Ps sorry for blabbing on! & spelling lol
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