Anyone Have Any Experience With Pku?

[pamperedape]

One of our dearest friends (actually she's like a mom to us) just had twin grandbabies. Her daughter and her hubby tried for over nine years to concieve, and finally did so with IVF. The pregnancy was horrible - the babies were almost born at 21 weeks! They made it to 34, were born at 5 and 6 pounds and so everyone thought things were great. Not so. The baby boy (Brady) has PKU. I am wondering if anyone has any words of wisdom I could pass along. They could really use prayers - they are all so upset.

 

[cathyskitchen]

No experiences, but just with a quick lookup, I found some information: PHENYLKETONURIA (PKU) - it looks like since it was caught early, he can maintain a healthy life through altering his diet. I know they test all newborns for PKU now, and this is why - to catch it early enough to avoid issues as they get older.

 

[Tropicalburstqt2]

I looked this up in one of my nursing books and it says that it occurs in 1 out of every 16,000 births in the US. Just make sure that she checks EVERYTHING that she feeds that baby, and if she plans on breastfeeding, she will more than likely need to be on a PKU free diet also!! Hope this helps!