This got me thinking, and thus googling Shone's syndrome/complex and anomaly. These terms are used interchangeably for Wren's condition. I found a new blog about a boy wo is ten with Shone's. He has had 2 OHS. I also found a record of a survey of the medical literature:
"Louis, J. D., et al. - Conclusions: Long-term survival of patients diagnosed with Shone complex is excellent. Operative strategies for this complex group should be individualized. Mitral interventions may generally be deferred."
This sounded very encouraging. I stopped googling before I found something ominous. It made me realize that I am still very anxious about Wren's survival. I just wish our cardiologist would say something like that all the time. Long term outcome is EXCELLENT. EXCELLENT!!!!!!
I feel better already.
6 comments:
Hi. Our son was born with a severe coarc, 5 small VSD's , 1 large ASD, he has a bi-cuspid aortic valve(supposed to be tri-cuspid) and his mitral valve is malformed but works normally. His surgeries have been done at Boston Childrens by Dr. Mayer. He was a small baby and toddler but is now a good size 10 yo. His surgeries were at 8 days old and 1 year. He has not been in the hospital since the week of his 1st b-day. He sees his ped card 1 time a year and he lives a normal life. Hope this is encouraging to you. The diagnosis is rare from what we have found so it is always nice to hear fomr people with the same diagnosis.
Dear Trish
you are so lucky that the mitral valve works normally!
Good luck for your future
marilena
Hello Shannon
I'd like to introduce us. We are a swiss/italian family living in Switzerland near Zurich. We have 3 children Leandro (5), Ambra Luna (3) and Naïma (1). Leandro was born with a severe Shone Complex. He had 4 surgeries so far, 3 OHS the last on JULY 31st, 2005. He was doing very fine till our last visit. Apparently there is further surgery needed. I'm desperate and not able to give you more info at the time and I think I'll tell you more when I feel more optimistic. Since the last visit I've been googling like mad to find someone who shared our desperate fate. Its the first time after 5 years I really felt the need to talk and still I am reluctant.
Your blog is very funny and touchy and you make me laugh and I wish I would be on that side again! The record you found of the a survey of the medical literature sounds very encouraging to me to and I thank you very much for this!! love marilena
Marilena
I am sorry your son seems likely to need another surgery. I presume from your comment earlier that the mitral valve is a problem. I know that surgeries are more likely if there is mitral valve involvement.
If you are looking for support and encouragement I can heartily recommend the TCHIN.org site. There is a group called PDHEART which has hundreds of members. There are a number of families of Shones kids who post and parents of kids with mitral valve issues. You have to join TCHIN to join but it is only $20 and worthwhile.
I have received links and copies of valuable research reports on LVOT problems from members there.
http://tchin.org/support/index.htm
I am glad to meet you and hope that your son does well and gets into a happy and heart stable place soon.
PS Marilena
I was told that much of the googlable research stuff on Shones is out of date. You shouldn't focus on reports from the late 90s or early 2000's because outcomes are improving all the time!
Dear Shannon
thank you so much for your help. Yes I would like to find someone who is coping with the same problem as we do and who can give me good news! That's all I want, really. And honestly I don't want to hear about any bad news... I think thats what we all want, don't we? Actually what does you're family think about cuttin your hair?
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