Last week, we got a phone call from our midwife informing us that our baby’s newborn screening bloodwork came back showing a positive for galactosemia.

Galactosemia is a condition in which the body is unable to use (metabolize) the simple sugar galactose.

This isn’t the same thing as being lactose intolerant.  This is worse.  It is also a fairly rare condition, only affecting 1 in 60,000 births.  Basically, if people with this condition take in any dairy products, the galactose builds up in their system, causing problems with liver, kidneys, brain and eyes.  It’s to be taken very seriously.

The moment our midwife called, Lori was to stop breastfeeding immediately.  Of course, this crushed her.  That is one of the things that she is supposed to do is being able to nurture our children as long as she can by breastfeeding, and now she’s being told that the very thing that is supposed to give our baby life, may now harm him.

The good news is that there’s a pretty decent chance that the test could have been a false positive. The test has been known to produce false positives, especially in the summer months when the temperature is pretty high.  I guess the enzyme that they test for is very susceptible to heat and can therefore cause the test results to appear as though they are positive, when in fact they aren’t.  The thing that we’re holding onto is the fact that I noticed that the traveling nurse, who is associated with the birthing center, made a house call for our 3-day checkup, she appeared to be pretty hot and sweaty when she arrived at our door.  I’m hoping that her car maybe didn’t have air conditioning and that the blood sample ended up getting compromised in transit that day.

We had to take Asher into the pediatrician the very next day to have his screening done again.  In addition to that, we had to take him to a lab to have a vile of blood drawn for the local metabolic geneticist to process, in the event that this does end up being a true positive result.  We’re praying that this was all for not and that he’ll be just fine.

For all intents and purposes, he appears to be in good health, even before we switched him last week from breast milk to soy milk.  Some of the symptoms associated with the condition are vomiting, lethargy, failure to thrive, trouble feeding, diarrhea, irritability, poor weight gain and convulsions.  He has had none of those symptoms.  In fact, his pediatrician said he appeared to be in really good health.  So that either means that it is a false positive, or if he does have the condition, he’s on the low end of it.

If it turns out, which I’m confident it won’t, that he has this, we’ll have to watch his diet very closely.  He’ll never be able to consume any dairy products, whatsoever.  The good thing is that in this day and age, there are plenty of dietary alternatives out there for people with conditions such as this.

We’ll find out some time this week what the results of his bloodwork are.  We’re just ready for our life to return back to mommy nourishing him instead of store-bought formula.

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