Is it Denial or is it Hope?

It seemed like ever since Sarah was born medical people have been treating Sarah like she isn't a "normal" baby. This may have been a blessing considering she was being fed every three hours in the NICU because of jaundice. This was before the Newborn Screening results were known. If she truly has CPT II this treatment and concern was to Sarah's benefit.


When I look at her, I realize there is a possibility that something is mutated on her DNA but it just doesn't feel like we truly have anything to worry about. I get frustrated that we are treating her based on fear of the possibility. Yet, if we don't treat her, something could go wrong and then we would feel horrible for not treating her while knowing there was a chance something bad could happen. If she doesn't have CPT II and we are treating her as though she does have it, then: she will not get a good night's sleep until we can give her corn syrup before bedtime; she will not be fed foods (like avocado) with "good fat" for brain development or just plain yummy foods like olives and cheese; and she is being given carnitine three times a day and this is not natural and seems like it would hinder her body from properly producing or recycling (whatever the biochemistry of carnitine is) carnitine in the future (disclaimer: the last statement is not backed by any scientific or medical evidence, it is just a possibility that I have wondered about). I don't like the possibility that we are hindering her development because we are living in fear.

I am very aware that I may be in denial. I don't think I am (haha, double denial). I am simply a mother that wants the best for my daughter. I want proof. Show me evidence that confirms or refutes whether Sarah has CPT II. A diagnosis of "Presumptive CPT II" is not acceptable in my book. This tells me there is still hope that she does not have CPT II. For Sarah's sake, I will treat her as though she has CPT II realizing that there are negative consequences and yet I refuse to ignore the hope and possibility that she doesn't have CPT II and is a "normal" baby.