Community Discussion Forum Parent support what was your first reaction to pku Reply To: what was your first reaction to pku

Avatar of Breanna

Addie’s mom,
I just wanted to give my thoughts on breastfeeding. I was my mothers third child and first with PKU. When I was born the doctors told my mom to stop breastfeeding right away so she stopped when I was 9 days old. Where will all my other siblings she breastfed for atleast a year. When my fourth and fifth sister came along my mom thought they would have PKU so she did alot of reading to see if there was anyway to breastfeed. They did not have PKU but when my sixth sister, Erica, was born she turned out to have PKU and my mom was determined to breastfeed.
My dietitian at the time was very against it (but she was against alot of things my mom wanted to try). But my mom did it anyway and my sisters blood levels came back just fine. She used what is called the Supplemental Nursing System (SNS). I’m not a pro at explaining this since I was only 8 at the time but basically my mother breastfed my sister while wearing this device which basically fed my sister her formula while she drank breast milk. So NEVER believe doctors, dietitians etc when they say it’s not possible because it is very possible! You can go to: nand read my mothers story (the first one) and stories from other mothers of PKU children who successfully breastfed.
I just thought I would post this to tell you and other new PKU parents that IS possible to breastfeed a PKU child. nBreanna n16 CPKU

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