Wednesday, January 13, 2010

Breast/Bottle and Galactosemia

As always I meander around on this blog... I craft, I live and so this blog reflects the way I live! My post today is a comment I posted on Facebook (with minor changes!) in response to a comment on an article that it isn't that "Breast is Best" but more that it feels NORMAL.

Here is the article... (note I read about 80% of it!)

... its not that it is best... it is very much that it is NORMAL for me. I was never trapped in my house due to breastfeeding... Hell I got 'em, I used 'em, I flaunted them for 2 of my 4 babies - which for my severely modest personality - I didn't even wear tight shirts as a kid! LOL! You'd understand... it was just NORMAL.

It irks me to no end that I couldn't breastfeed baby E. When you're in the post midnight throws of postpartum (as opposed to the pre-dawn bliss - when all seems to come back into focus! and be normal in your sleep deprived brain!) and your doctors throw around an earth shattering word like 'GALACTOSEMIA' and your research yields the word 'DEATH' - and generally before the results come in the damage is done... you stand up with tears in your eyes and anger and frustration in your heart - at the unfairness of it all and say "Well, S**T, it sucks but its best for her" and to hell with what feels "Normal" and "RIGHT" to you! Her survival is paramount.

(FWIW, she was a 31 weeker - a preemie - and spent 35 days in the NICU - despite that I could have - and would have gone onto have a NORMAL breastfeeding relationship with her, except for this one HUGE stumbling block!)

It irks me, to hand this child a bottle of formula and know that I could produce something far more nurturing to my spirit than something canned that has sat on a shelf for how long. I don't begrudge the parents that choose to bottle feed ... hell if it feels right to them go for it! I'm not a breastfeeding nazi - if I was before, this has definitely humbled the experience!... I don't begrudge the parents that breastfeed their babies. But I do stand back with a feeling of jealousy, a tear in my eye, a hole in my heart for the emptiness that I feel when I hand my baby a bottle of formula instead of having her suckle, and know that I was at least lucky because mine survived and mine after 6 weeks was JUST a carrier! I think we got the FINAL answer when she was 10 weeks old. How's that for speedy answers on a potentially life threatening condition?? FWIW, most children with full blown galactosemia (not the duarte variant) don't survive beyond 2 weeks of life - both regular formula and breastmilk is TOXIC to them! Soy is the only viable option.

It fills my heart with Sadness to know that E's babies will have to be tested immediately after birth - to make sure that they don't have the full fledged disease that would permit something so NORMAL to KILL them. It fills my heart with sadness to know that if she wants to breastfeed - she can't do so immediately after birth - that she will have to wait almost 2 weeks and be a slave to the damn pump - but at least today she has that option, and she will know what she faces. It also fills my heart with sadness (to the point that I have thus far ignored it...) that she may not be able to have her own babies... though I think that was ruled out when we found out she is JUST a CARRIER!

Bottle feeding doesn't feel NORMAL to me! But this is why I do what I do!

FWIW, Galactosemia is very similar (yet very different) to Lactose Intolerance - only more severe - in that it can and OFTEN does kill - because the body is unable to process the Galactose in the foods, it builds in the body until it reaches toxic levels. If you want to learn a little more on Galactosemia visit

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