I thought this was a rare thing? I have met no less than FIVE parents of children with this condition in the past 4 days. And now another that is in Orlando. 6. SIX little ones with this. What's up with that??
Very odd! Or, is it that you are seeing the specialist tat deals with a rare condition? I know my brother has a child with an extremely rare genetic disorder and yet, when they goto their specialist, they are surrounded by parents with kids who have it. Amazing though! How are the other parents' kids doing? Is it giving you more hope???
When Sawyer was in the hospital, I think there were 2 with that. (Of course, at first they thought that is what Sawyer had) It's truly amazing who you meet and what their stories are, isn't it? You wonder how some people do it once you hear their stories.
Yes, it's "rare" but remember you're in the place where you're going to run into all the "rare" people! You're where they all go when there is trouble or they need another surgery. I have met several kids with HLHS (and one with HRHS) over the years. The very first one was in the NICU isolette next to Angela when she was born. And when she was 3 an in for a GI surgery, we met the same family again as their little guy was having his 3rd surgery. Talk about timing!
HLHS mama here. We were told it was rare, but my god, EVERYONE I know knows someone else whose kid has it!!! I've kept a running list of the few HLHS blogs I've come across, and there are a lot. Not to mention, I get emails from newly diagnosed parents regularly - I'd say it averages 5-6 a month.
Hypoplastic left and right is a rare in the scoop of congential heart disease. Considering 1 out of every 100 children born have some form of congential heart disease and 1 to 3% are born with single ventricles. I am the first generation of survivors with HRHS. I actually know more HLHS adults then HRHS. I am a survivor but with that comes a lifetime of surgery. Every day bring a new hope.
Very odd! Or, is it that you are seeing the specialist tat deals with a rare condition?
ReplyDeleteI know my brother has a child with an extremely rare genetic disorder and yet, when they goto their specialist, they are surrounded by parents with kids who have it.
Amazing though! How are the other parents' kids doing? Is it giving you more hope???
When Sawyer was in the hospital, I think there were 2 with that. (Of course, at first they thought that is what Sawyer had) It's truly amazing who you meet and what their stories are, isn't it? You wonder how some people do it once you hear their stories.
ReplyDeleteJan
Yes, it's "rare" but remember you're in the place where you're going to run into all the "rare" people! You're where they all go when there is trouble or they need another surgery. I have met several kids with HLHS (and one with HRHS) over the years. The very first one was in the NICU isolette next to Angela when she was born. And when she was 3 an in for a GI surgery, we met the same family again as their little guy was having his 3rd surgery. Talk about timing!
ReplyDeleteHLHS mama here. We were told it was rare, but my god, EVERYONE I know knows someone else whose kid has it!!! I've kept a running list of the few HLHS blogs I've come across, and there are a lot. Not to mention, I get emails from newly diagnosed parents regularly - I'd say it averages 5-6 a month.
ReplyDeleteI want to give my friend some comfort, and information, but I had never heard of HLHS before..
ReplyDeleteKathleen -
ReplyDeletePlease let your friend know she is more than welcome to email me! She can get in touch with us through our son's site - babysamson.com
Hypoplastic left and right is a rare in the scoop of congential heart disease. Considering 1 out of every 100 children born have some form of congential heart disease and 1 to 3% are born with single ventricles.
ReplyDeleteI am the first generation of survivors with HRHS. I actually know more HLHS adults then HRHS. I am a survivor but with that comes a lifetime of surgery. Every day bring a new hope.