Saturday, October 11, 2008

On a much more serious note...

You really don't know what pain is or what it means to hurt until you receive news that something might be wrong with your child. We found out yesterday that Nora's newborn metabolic screen showed a marker for a genetic condition called galactosemia. I had to stop nursing her right away and we had to switch her to a soy formula.

I think my heart broke into ten thousand pieces, and then shattered into a thousand more. I couldn't even watch Chris give her the bottle. It has been a rough 24 hours coming to terms with the fact that for Nora, right now, the breast isn't the best - in fact, if she does have this condition, the breastmilk would be fatal. I've been crying my eyes out mourning the loss of our nursing relationship, and Chris has been, of course, a pillar of strength while I try to pull myself together and figure out how to come to terms with the fact that everything I learned and thought we would do is completely thrown out the window.

We go on Monday for genetic testing to see if she actually does have the condition. We won't know for 7-10 days what the outcome is. It's going to feel like an eternity. But in the interim, I'm going to keep pumping to keep my supply up as best I can, just in case it was a false positive and she can have breastmilk again.

If she does have the condition, it means she will be on formula and can never have anything with lactose. From the GANES website (

"Classic Galactosemia is a rare genetic metabolic disorder inherited through a gene from both parents, who are carriers. Normally, when a person consumes a product containing lactose, such as milk, cheese, or butter, the body breaks the lactose down into the sugars glucose and galactose. Glucose is used by the body for energy, while galactose is converted into usable glucose. In galactosemia, the enzyme that converts galactose into glucose is missing. An excess of galactose accumulates in the blood. The build-up of galactose is a poison to the body, and can cause serious complications such as enlarged liver, kidney failure, cataracts, and brain damage."

I would like to just throw this out there - you can never truly judge someone for what they do until you know their story. I always looked at women who fed their babies formula with digust. I couldn't understand why anyone would choose to give their baby an inferior product. I never took a moment to realize that maybe that woman doesn't have a choice. Maybe that formula is the best choice for her baby and for her family.

Similarly, after giving birth to Nora, I completely stopped looking down on women for getting epidurals. Previously, I thought those women were all weak - how could you do that and not want to experience childbirth? Well, now that I've experienced it for myself, I can totally see why -- and I cannot believe that I was so judgemental and short sighted.

Please keep Nora, Chris, and I in your thoughts.


Anonymous said...

I will say a prayer for Nora. Have faith that everything is fine. Remember to breathe. I am here if you need me.

mrjackchen said...

Here's my thought: She'll be fine. No matter what the tests say, the three of you have each other and that's a lot more than what most families out there have.

Stay strong and let me know if there's anything I can do.