We have had too many precious babies fight hard against congenital diaphragmatic hernia and still loose the battle - not the war. The war is still going on with their parents, grandparents, families and friends. There is a need to have more effective treatment for these babes and for lung function to be improved so they can survive.
When Cecilia was born in 1999, they had little they could do with the number one killer to these babies - pulmonary hypertension. A few years later there were more drugs out there that could be given to these babes to get them to the point of recovering and those lungs to the point that there may be little need for the drugs or none. Some children may still need the medications - some do not. The point is - it is out there now to help. We need more, so much more.
It just doesn't seem to be enough out there.
I am not asking for a "cure" - I have seen long enough and researched congenital diaphragmatic hernia long enough to know it is a naturally occurring birth defect. I would like to see the survival rate at 99% - nothing in life is 100%. Next is to have more out there for families and children to have the best therapies so when they do survive they can be the best they can be and get the help for them to have a good quality of life and overcome as much as they can.
Some days I feel so helpless in this war on this monster...
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