My 9 month old daughter has just been diagnosed with cystic fibrosis?
Posted in xn--kfs74mzzid01b.com edit by mike on January 9th, 2009
First, know that your daughter is likely to into adulthood and has a really good chance of living to middle age adulthood.
I don't know much about your job, so I'll give you some ideas to think about:
do you have health insurance through this job? If yes, carefully consider what giving up that health insurance could mean.
For a little while, it's likely that you will have to take your daughter to clinic visits frequently, such as monthly. Is your job flexible enough to accommodate that?
how do you feel about this job? Is it something you love to do? In other words, although of course you love your daughter lots and lots, would it pain you to give it up? What are the costs involved in giving up your job (loss of benefits if any, money, a sense of fulfillment, etc).
Now, having said all that, there are things that you will need to do to help make sure your daughter is as healthy as possible. I've already mentioned clinic visits, which should be done at least every three months once you are established with a clinic and have undergone some training (usually done in clinic). That's every three months from now on. Will you need a family medical leave in place? You'll be doing some treatments at home. At the very least, you'll be giving your daughter enzymes at every meal and snack, and doing what they call airway clearance to keep her lungs clear.
Oh, and take into consideration how much day care costs, too, while you're thinking about leaving your job.
It is hard to leave a child and go to work, and I think it's harder if you have worries about their health.
I should also mention that your local CF clinic does have resources and people to talk to, in order to help you make this type of decision.
I work in a CF clinic and we encourage parents to do what's best for the family as a whole. I'm sure the docs would like it best if the younger CF kids weren't in day care, but they're realists and know that parents have to work.
Good luck with your decision, and I'm thinking of you all.
Currently, there is no real "cure" for it. It will just worsen the older she gets, though there are some treatments out there to relieve pain/symptoms.
I don't think you need to quit your job, you are going to need that money later on for other treatments. And if it's not bad right now while you quit your job, and then you go back to work and she goes through a bad spell, there was really no point in quitting your job.
Personally, I would talk with the doctor to plan a course of action. I personally suggest you don't give up your job, especially if she's not in bad condition right now.
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