Guestbook
If you would like to make a comment about any matter related to the Association, your own experiences with a heart child or comments about our website, you may do so in this Guestbook. Note: Latest entry is now at the bottom of the last page.Page: < 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
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Brooke & Charles, US
Sent: 2008-02-20 at 05:03:44 GMT
When our son Jaxon was 9 days old we found out he had physiologically corrected transposition of the great arteries, large inflow VSD and cleft mitral valve. On August 2007, Jaxon had open heart surgery to close his VSD, the cleft in his mitral valve and to close a small patent foramen ovale. Since then he has gotten off of the 5 medicines he had been taking since he was 2 weeks old and doing great. Starting next month Jaxon has to go every month to get a 24 hour heart monitor to check for heart blocks and if he has a block he will need a pace maker. If anyone else has a baby with this condition I would love to hear from you. This has been a terrible rollercoaster!
Click here to contact 'Brooke & Charles'.
Alison Blake, Blackpool
Sent: 2009-01-21 at 18:16:22 GMT
My name is Alison and I am currently 33 weeks pregnant with my first child. My husband and I found out at our 20 week scan that our daughter has a congenital heart defect, suspected pulmonary atresia with vsd. We were given our options by the cardiologist and we decided on having an amnio to rule out any genetic disorders and to carry on with the pregnancy. We were offered a termination but for us it wasn't even an option. We decided as long as she was fighting we were not giving up on her. The amnio results all came back clear and further scans have shown that she is growing well (above average) and her heart seems strong although the problem is still there. I hope this is a good sign that she is strong and she is a fighter, she certainly has one hell of a kick on her! I just feel scared at the moment as I don't know what to expect. I keep feeling excited and go out and but baby things one minute and then the next i am a crying wreck, terrified of losing my little girl. If there is anyone who has had a similar experience or is going through the same thing we would love to hear from you. Although our family and friends have been supportive it would be great to talk to someone who understands.
Sorry, 'Alison Blake' did not leave an email address.
Fiona Willis, Sandy, Bedfordshire, England
Sent: 2009-02-28 at 22:44:55 GMT
Hello, my daughter Lana was born with supra valvular aortic stenosis (SVAS). She has just celebrated her 2nd birthday and so far she has shown no symptoms, but her consultant at Great Ormond Street says her condition has deteriorated since it was first diagnosed a year ago, and he anticipates she will need surgery within the next 2 years. He has mentioned Brom's three-patch technique as the most appropriate surgical procedure.
Does anyone else have experience of supra valvular aortic stenosis (either with or without Williams Syndrome)? I would love to hear from anyone who has knowledge of the condition, of the possible surgical options, or of surgeons specialising in the repair of SVAS.
Thank you very much.
Click here to contact 'Fiona Willis'.
Ann Dawson
Sent: 2009-05-21 at 13:45:03 GMT
Hi, I have a 10year old daughter who has just been diagnosed with Rheumatic Fever with Sydenhams Chorea. This has left her with Rheumatic Heart Disease which has damaged her Aortic valve (medium/severe) and also her Mitral Valve (medium). This is all very new to us and i'm having difficulty know what she can or cannot do. I think it would be useful for Kirsty to be in touch with other heart children as she becomes accustomed to this new way of life, also for me too.
Hope to meet others soon
Ann
Click here to contact 'Ann Dawson'.
Julie Duffus
Sent: 2010-01-21 at 19:38:56 GMT
My son is 6months old, while pregnant it was discovered he had Truncus arteriosus. He had surgery at 2weeks old and he recovered very well, i am looking to chat to someone who has perhaps experience of this condition or any other heart condition.
Julie
Click here to contact 'Julie Duffus'.
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