firstly I have to report that they think James is doing 'Great'!! He is gaining weight and growing on a par with a 'normal' twelve week old. His development is right on track and he 'looks very good'. Yipeeeeee! It feels like I've recieved his first 'excellent' on a school report. So proud of this little boy. He fills me with Joy at least 100 times a day. Well done baby boy!
They took a chest Xray to monitor and it looks good but we'll know more about that at Mr Nicolls clinic on September 15th. Generally he is doing well though.
It was strangely nice to be at the hospital today. Familiar and nice. I guess this was the place this journey began.....and although that journey was so hard, it gave us the most precious gift in all the world.
I had some really interesting conversations with our consultant and pediatrician about CDH research and treatment. They would support any independent research we embark upon and will make the geanologist available to us. They also gave us the name of the person to contact to receive medical advice and expertise. They suggested that more research needs to be put in to causes as well as cures.
Before I write this next paragraph please be aware I do not want to offend ANYONE! I feel it is only fair to share things like this to help CDH talk, evolve, learn and STOP!!!!
We had a long discussion about the vast differences in treatment between the UK and USA. The pediatricians here in the UK are highly concerned with the way US babies are treated. ECMO is only a last resort in very few babies here in the UK. It is very, very rare for a CDH baby to be transferred for ECMO here. Why then is it so common in the USA. With the CDH community hit so badly at the moment, I really think we need to be asking questions....why is the UK survival rate 70-80% in 2008/2009?????? What are the differences.
Please don't get me wrong, I am really NOT criticising the medical staff who took care of our beautiful babies....they are amazing and I genuinely believe they are doing the best they know how with each and every baby. I just want to make sure the 'norm' is really the best!
I'm really sorry if my posts are intence and questioning recently. I'm throwing thoughts around, trying to make sence of 1000 things! I've watched too many friends go through the worst possible thing for a parent to bare and I want to change things.
As I said before, please don't take anything with offence......I'm thinking out load.
With love to you all
Wednesday, 2 September 2009
Posted by Michael and Elizabeth Reeve at 13:22
Tuesday, 1 September 2009
I'm absolutely determined to get more research going and have been trawling the web!! It seems there are hundreds of medical journals linking Nitrofen ( a prohibited herbicide ) with CDH. In FACT (and this makes me steaming angry) in order to try and realise a possible cure for the condition, they induce CDH in rats with Nitrofen. They know that feeding Nitrofen to rats on day 8.5 of gestation will cause its babies to have CDH...hmmmmmm!!
Now I kind of get why this isn't public;y discussed - Nitrofen after all is illegal in the U.K and USA but I'm wondering if there is a black market for it somewhere or if one of the components in Nitrofen is common in another, widely used herbicide or pesticide? I need a chemist or chemical analyst. I'm on the case. As of tomorrow I'm making it my Erin Brochovich type mission to look in to this.
Right now I'm thinking ..... how dare they know of a cause of CDH and not make it SO public that all the laboratories in the world aren't researching further.
Whilst researching I also found this....and I quote ''Antenatal steroid therapy, by suppressing pulmonary ACE activity, may reduce the risk of pulmonary hypertension developing in human newborns with antenatally diagnosed CDH.'' That's right....and were you offered this???????? I certainly wasn't. Basically, steroid treatment might help CDH babies with their pulmonary hypertention.
If anyone knows anything please please please help me. xx
Posted by Michael and Elizabeth Reeve at 14:44