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Post by sarahb on Jul 5, 2008 16:26:59 GMT
Hello! I would like to introduce my daughter Ruby. Ruby is 2. She is the youngest of 5. As well as DS Ruby has Tetralogy of Fallot and a complete AVSD. She is having more surgery at the end of July. I would love to hear from anyone whose child has the same heart conditions. Our surgeon says he has never met another child with Ruby's combination of heart condistions who does not have DS. So, there must be someone else out there!!
Looking forward to getting to know everyone.
Sarah
Sarah
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Post by claireyd22 on Jul 5, 2008 19:57:12 GMT
Hi Sarah and a big to you and Ruby. I'm Claire, mum to Esme 8 and George who has just turned 2 and has ds. He also had a complete AVSD which was repaired when he was 6 months old. Rilith will probably be able to help you as her little girl Holly has TOF and I'm sure AVSD aswel. Which hospital does Ruby go to for her heart - George goes to Birmingham. Look forward to chatting to you again and would love to see some pictures of Ruby xxx
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Post by sarahb on Jul 5, 2008 20:00:04 GMT
Hi Clare - we go to Bristol Children's Hospital - can't work out how to upload photos - any clues?
Sarahx
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Post by pinkshell1110 on Jul 5, 2008 20:36:22 GMT
hi sarah and welcome to you and your family,i am shell, mum to 6, charlie is number 5 and he has DS he is 4, ,charlie had an ASD and VSD and PDA which were all successfully closed when he was 9 months, so cant really help hun cant wait to see piccies of ruby lots of love shell,charlie and jasmin xxxxxx
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Post by Rilith on Jul 5, 2008 21:12:33 GMT
Hiya Hunni. I am Mum to Holly and she has the same heart defects too. Sadly Hollys is even more complicated and they are unable to do any further repair surgeries. I hope Ruby's surgery goes well You must keep us posted and I am more than happy to natter away
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Post by lizzymd² on Jul 5, 2008 22:48:27 GMT
Hi Sarah and Ruby
Just thought i'd say hi, sorry can't help with heart defects but theres not much rilith won't know about it.
I'm Lizanne mum to Alex, Cameron (ds), Niamh and Carly
Youngest of 5? never a dull moment in your house
Lizzy
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Post by sarah on Jul 6, 2008 8:50:40 GMT
Just wanted to say hello and welcome to this marvellous site!! Ive only got Daniel (whos 2) - he's more than enough!! Cant imagine 5!!! There is always someone who can help with whatever problem/issue/anything you may have!! xx
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Post by anita on Jul 6, 2008 18:45:31 GMT
Sarah and Ruby, Just thought I would say hi, I'm Anita mum to Daniel (4) and Henri (18 mths) who has DS. I can't help with the heart defects but other people on here will be able to help. Look forward to seeing some piccies.
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Post by sarahb on Jul 6, 2008 19:15:21 GMT
HOW do I put pictures of Ruby on here? ?? Sarahx
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Post by claireyd22 on Jul 6, 2008 19:56:00 GMT
Hi, if you go to the picture gallery there is a link to photobucket. You upload your pics onto there then copy the IMG Code which is under the photo and paste it to where you want - your signature or a thread. Hopt that helps but if I can do it then anyone can lol xx
ps, you may want to edit the size of the picture when you have uploaded it x
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Post by debs4 on Jul 6, 2008 21:04:32 GMT
Hi Im Debbie, Mum to 4. Gemma is my youngest she is 2 and a half and had 2 lots of open heart surgery at 3 months old for complete AVSD. She is an amazing little girl and doing great now. This is a wonderful site. xx
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Post by tantalizintina on Jul 7, 2008 10:50:31 GMT
Hi i'm Tina mom 2 3 gawjus boys... dan 18 liam 16 n my youngest lewis who is nearly 6months... lewis had a full repair 2 a vsd in april plus a pda ligament.. goodluck wiv ruby's surgery... So glad u found this wonderful site.. dont know where i'd b without these ladies xxx
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Post by karenh on Jul 7, 2008 18:57:23 GMT
Hi sarah Im karen mum to Luke age 10 and Lucy(ds) 10 months looking forward to getting to know you and Ruby x
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Post by lisajg on Jul 10, 2008 17:59:13 GMT
Hi Sarah & Ruby I'm Lisa, mum to Harrison ('Harry') and Sam. Harry has ds and he had heart surgery, not the same as Ruby tho - he had closure of PDA and repair of narrowed aorta. I'm sure they will take very good care of Ruby, let us know how she gets on and look forward to chatting more. Take care xxx
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catemc
Junior Member
Posts: 63
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Post by catemc on Jul 14, 2008 16:57:32 GMT
Hi i am Mum to Laura who is 12 days old. She is youngest of 3 and has AVSD and PDA. We didnt know she had DS untill she was born and it was a big shock. We have appointments each week to monitor her heart and at the minute all is well. Im worried i wont be able to tell the signs should she go into heart failure can anyone share their experiences.
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Post by sarahb on Jul 14, 2008 17:28:50 GMT
Hi! Just saw your reply! Don't worry you will know the signs. It is probably very very unlikely Its so frightening in the early days as you don't know what to expect. I am happy to chat any time - my email is sarahbateup@mac.com. Don't hesitate to get in touch.
Sarahx
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catemc
Junior Member
Posts: 63
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Post by catemc on Jul 14, 2008 17:46:05 GMT
thanks its good to find this site so far we havnt had any info from the docs so not sure what to expect. We have an appointment onThursday so will hopefully know more then. Does an avsd always need operating? We are in Banbridge NI does anyone know of any support groups local to me?
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Post by sarahb on Jul 14, 2008 17:59:37 GMT
Yes, generally an AVSD does need operating on. Do you know whether it is partial or complete (big or small).
As you can see Ruby has a complete AVSD and tetralogy of fallot. What hospital are you under?
Don't forget contact me if you want - we can maybe swap phone numbers.
Sarahx
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Post by pinkshell1110 on Jul 14, 2008 18:14:30 GMT
hi there my little man had a vsd and asd and pda.i found when charlie was going into heart failure he went quite breathless,very sleepy, wouldn't eat, and he often got a build up of fluid usually around his eyes,testicles and hands and feet . hope that helps in some way lots of love shell,charlie and jasmin xxxxxxxxx
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catemc
Junior Member
Posts: 63
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Post by catemc on Jul 14, 2008 18:51:41 GMT
they didnt say whether big or small or if they did i was in too much shock to take it in. We will be going to The Royal Hospital in Belfasts cardiac clinic and our paediatrician is in Craigavon Area Hospital.
Thanks for the help im sure ill have many more questions
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Post by tracy108 on Jul 22, 2008 19:09:01 GMT
my cory had a complete avsd in the royal they are fab in there and will answer any questions at anytime so dont be afraid to ask...
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