Hi Guys,
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
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Dentysta Grudziądz
8 years ago
6 comments:
Hey, I too am an Erin Brokovich!(sp?) Myself and another lady in this teeny timy town had cdh babies 4 weeks apart. So weird. But we were in our firt tri's in the winter...so no herbicide around here then. Unless it's used near fruits and vegies that are imported? However, I am so SURE :) our cdh babies were caused by the water here. Maybe they used an herbicide to kill algae in the lakes we get our water from? All I know is I am drinking water from another town and storing it in glass botttles the next time I am pregnant. :) Susan Caudle www.susanandmonty.blogspot.com
i'm glad you posted this....it made me look it up!
I had the Betamethasone shots (the antenatal steroids). My perinatologist said there isn't much research that said it helps for CDH lung development, but there isn't research that said it DOESN'T help either.His theory? Why not? I got the shots in my 36th week. He explained that is usually given for only kiddos who may be born early, which mine obviously wasn't. Did it help all? Who knows... He had a huge defect with almost all his intestines in his chest, including part of his liver...His first three days he had a fairly low level of pulmonary hypertension (during the honeymoon period). Then it climbed by hour 71...went on ECMO for 13 days, repaired, extubated, etc. Home after 62 days...His echos now look VERY good , with very low levels of PH...Again, did the steroids help? We know that one reason he had such a good outcome was the SIZE of his left lung and how much lung tissue was behind all those intestines. Hope that helps! By the way, my little one was born the day after James, but I don't have a public blog... :)
Hi
My son Joel was born with LCDH and lived just 17 hours. Joel is my sixth child and between Joel and Ben my fifth child we swopped to organic food, toilettries etc so I am as sure as I can be I didn't eat anything with pesticides. However, how do I know what people are spraying in their gardens? A few trees have died mysteriously in our garden over the past few years which often makes me wonder?
I also had the steroid shots at 34 weeks as I had polyhydramnios and lots of tightenings. Joel was born after induction at 38+3 weeks.He became very poorley very quickley.
Good luck, I would love to hear if you find anything out
Love Debbie
www.joelarchie.piczo.com
ps I met some friends of yours recently when we were bag packing for Joel's ventilator in m&s Tolworth..small world
I always wondered about that. I was told CDH is caused enviromental but there was no specifics.
Nitofen is known to cause CDH in rats... not humans. There have been no definitive tests that find it causes CDH in babies... or believe me, CHERUBS would be shouting it from the rooftops trying to warn people!!
We lived surrounded by crops when I was pregnant with my cherub so I hear ya and understand!
We had 3 different sets of doctors at our conference this year including Boston Children's CDH Research team, Baylor's CDH Research team, and the International CDH Study Group... they all still say that there is "no known cause of CDH". Not yet.
We're all still looking!
I know that's frustrating to hear when we want answers now. What can CDH parents do? Join as many research studies as possible. All of them. And as soon as CHERUBS CDH Research database goes live (we're working on it, hope to be up ASAP) then please fill out your medical histories there. We have over 3000 CDH families... if we all work together we can find the cause, prevention and best treatment for CDH that much faster.
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