GuestbookIf 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.
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Ann, Brookfield CT
Sent: 2007-08-02 at 12:59:05 GMT
Hello, I was hoping someone could help me. I am trying to help my sister learn as much information about an upcoming surgery called Ross-Kono that her daughter will be facing shortly. Can anyone tell me of their experience with this?
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Ceri Jones, Amlwch, Anglesey, North Wales
Sent: 2007-08-07 at 11:25:31 GMT
My son Jac was diagnosed in Alder Hey at 2 days old with Aortic atresia, Hypoplastic Ascending arch and a large VSD. All were repaired and a conduit inserted which will need to be replaced as he gets older. He's doing really well at the moment after a slight set back when they found fluid around his heart 2 weeks ago but seems to be under control again. He's 12 weeks old now but everything still feels unreal and terrifying. The rollercoaster never seems to stop. The early days were so difficult I really thought I'd never get through them but you just have to grit your teeth and you do get there in the end, honestly! Good luck to everyone. Kids, no matter what they put you through they are worth it!
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stephanie, liverpool, England
Sent: 2007-08-09 at 19:57:16 GMT
hi i am 9 years old i have an avsd and a leak on my mitral valve.i had a repair on them when i was 3 ...but i still have a leak . i like meeting people and i am very kind to others and animals. i get tired easy and i would like to meet people with my condition thank you xxxxxxxxxxx
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Sarah & Andy, Tamworth
Sent: 2007-08-18 at 19:49:12 GMT
Hi, We found out a week ago that our 10 month old daughter has AVSD. We'd like to hear from anyone thats had any experince of this condition. Its all very new to us at the moment as we had no idea that there was anything wrong.
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tracey willoughby, walsall, uk
Sent: 2007-09-30 at 08:14:32 GMT
Hi, my son dylan was born in august 2006 with fallots (a condition that my partner and i had never even heard of)we were told that he would need regular check-ups at birmingham childs hosp, maybe a shunt and then a full repair at 12 months old. Dylan was fine for the 1st 3 months following birth he just looked a bit blue sometimes and then almost overnight things changed and he always looked really blue and he began to have "spells" where he would scream and scream for hours then would suddenly turn blue then fall asleep, obviously this was terrifying to see happen. The docs at bch decided he needed surgery asap and so he was admitted in january 2007 for catheterisation so they could see exactly what was happening inside his heart and it was decided that a shunt wouldnt make any difference and he needed the full repair asap. Dylan went into bch and had the repair on 22nd february 2007 aged 6months, he was in surgery for 4 and a half hours and then went into intensive care where he was on a ventilator for 16hours, this is the worst part of the whole process and no amount of pictures and talking to people can prepare you for seeing your child like that. After a day in intensive care and 2 days in hdu Dylan then went onto ward 12 at bch where the nurses are fantastic. Dylan had a few little problems following surgery but we went home 2 weeks later. Dylan is now 13 months old and is doing relly well, he is like a different child post op he is full of energy, always happy and a joy to have. we still have to go 2 outpatients every 6 months for a check and we know Dylan has a leaky valve and will need more open heart surgery for a valve replacement but we dont know when. If anyone with a child with tof would like to email me please do as i would love to talk to other parents, my email address is < ... >
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sara young, bacup, lancashire
Sent: 2007-10-20 at 19:38:51 GMT
I have a four year old son who was diagnosed with dilated cardiomyopathy at birth. He has responded well to medication and his heart now appears "normal" at scans. We administer enalapril maleate twice daily as we always have. We have however noticed that our son is very irritable and short tempered. Could this be a result of the condition or the medication? If anyone is in a similar situation with this condition or this medication you comments would be greatly appreciated.
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donna jones, manchester, lancs
Sent: 2007-10-21 at 07:58:35 GMT
my daughter has aortic valve stenosis.She was 9 weeks old when she had a balloon valvuloplasty and has done well. She is now 10 and unfortunately her valve is moderately stenosed and is also leaking badly so she is on the waiting list for the ross procedure. She does tire easily and i am so scared of this surgery. She is so precious and its such a big thing for a little girl to go through. If there are any parents who are going through similar I welcome your expertise/advice. Thanks for listening.
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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'.
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