Wednesday, 2 September 2009

Hospital Appointment, more on the cause of CDH and pediatrician ECMO in US opinion...

Hi All,

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

Beth xxx


Liz and Shane said...

I have tons of questions of my own to the Doctors here in the USA and UK. They should all get in the same bandwagon and put their medical expertise together. My husband and I have often wondered how many survivors are out there that are not accounted for.

Liz and Shane said...

BTW, so glad James appt went well. So good to hear he is doing so well.

Candice and Rob Beal said...

i'm not a big fan of ecmo right away either.......hell thats the machine that took jacksons kept is pph really high and the machines kept breakng and everytime that happened it put his pph right back up there.....i dnt knw if you know or not, but Jackson wasn't suppose to have much lung at all and after he was born they found that he had a very good amount on both sides.....he cryed at least 5 or 6 times that i heard when he was born as well....anyways we will never know why everything happened

FaithCDH said...

Australia also has a higher survival rate than the US. My daughter was on ECMO, came off of ECMO and then got a blood clot in her heart because of ECMO. She passed away 12 days after she came off of ECMO.

It's hard to say if this would have been different if we would have been treated somewhere else. You are right that all the doctors are doing the best that they can. I have to remember that and try not to think about all the what if's.

Take care,

Amy Miles