I have a client whom I have worked with through 2 babies. The first she had hyperlactation which she handled by donating gallons and gallons of milk to milk banks. The second we had a plan in place to avoid the situation entirely - HOWEVER - that baby was diagnosed with galactosemia. Turns out there are several types of galactosemia - the most severe where the the baby has no ability to break down galactose and will literally "wilt on the vine" if breastfeeding or any form of lactose containing milk is fed. It is a severe disease. But there are other milder versions where the baby has diminished amounts of the enzyme and CAN be breastfed. We went through a pins and needles time where the baby was taken off breast and mom pumped while the genetic testing was done. I am happy to report mom was able to resume breastfeeding and baby did NOT have the most severe form and whilst some of the medical community she encountered was not supportive of continued, others were more knowledgeable. I have also had mothers with PKU babies that continued to breastfeed, using the much-maligned scale to keep track of baby's breast milk intake and balance out with the special formula. What I think the medical community fails to understand is that breastfeeding is not just food transfer, nor is it just psychological bonding, but it is both and important to keep that fine balance going. Just like truth must be balanced with gentleness and respect.
-----Original Message-----
From: Lactation Information and Discussion [mailto:[log in to unmask]] On Behalf Of Karen Gromada
Sent: Tuesday, July 26, 2011 3:24 PM
Subject: Re: Galactosemia question
Would reiterate what Pat wrote re: genetic testing of dad and mom ASAP and baby if here. Classic galactosemia is an autosomal recessive disorder, which means it takes 1 galactosemia gene from dad and also 1 from mom for the baby to be affected. Dad obviously has the gene if he has galactosemia, but even if he passes that gene to his baby, the baby wouldn't develop galactosemia if mom is not a "carrier" so does NOT have that gene. (However, baby probably would be a carrier, which is important to know when baby grows and thinks about marrying and starting a family.) To sum it up, breastfeeding would only be a contradiction if baby inherited the disorder because both dad and mom contributed a galactosemia gene to baby. It's much more likely that mom does not have the gene than she does, but this is a situation where a little testing can save a lot of worry or concern! (Hope that makes
sense!) There's more info at http://ghr.nlm.nih.gov/condition/galactosemia
K
Date: Tue, 26 Jul 2011 13:03:46 GMT
> From: "[log in to unmask]" <[log in to unmask]>
> Subject: Galactosemia question
>
> If a father has galactosemia, is this a contraindication for his wife
> to breastfeed their first child? There is not an answer to this
> question in Lawrence, or in Riordan.
>
> ____________________________________________________________
>
>
> Date: Tue, 26 Jul 2011 10:38:53 -0400
> From: Pat Young <[log in to unmask]>
> Subject: Re: Galactosemia question
>
>
> First, the baby will be screened at birth in most USA hospitals for what
> are called inborn errors of metabolism (Galactosemia is one of those).
>
> Second, they need to avail themselves of genetic counseling before
> pregnancy. If already pg, both parents can be tested. Both parents
> have to carry this recessive gene to have an affected baby. They need
> to investigate this and learn all the ins and outs of how this is
> passed on.
>
> Third, if are already having a baby, and somewhere testing isn't done,
> they could ask for testing as soon as baby is born specifically for
> Galactosemia.
>
> Hope this helps
>
> ***********************************************
>
> --
Karen Gromada
www.karengromada.com/
http://www.marchforbabies.org/karengromada
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