Can I breast feed a PKU child?

With support from the clinic and your dietitian you can have a successful part time breastfeeding experience. How much or often you will be able to breastfeed will depend upon the severity of the PKU the child has. Different clinics and staff support different methods. Some clinics will suggest rotating feedings between the special formula and breastfeeding/breast milk. Other clinics will have mothers supply both breast milk and formula at each feeding. You should discuss these options with your clinic staff.

My story: A PKU breast feeding story

My name is Tanya, and I have two sons with PKU. My oldest was born in 2002 and my youngest, was born in 2006. For me and my husband the diagnosis of PKU for our first son was a complete shock. We had never heard of it and had no idea what it meant. When our little one was born, we knew that we had a 1 in 4 chance of having another child with PKU. He was diagnosed earlier than our older son had been due to help from the Department of Health (since he had an older brother with PKU).

Our youngest had been breastfeeding well when we found out that he had PKU. Since his brother also had it, and we knew his phe tolerance, our dietician had a pretty good idea how much phe the baby would be able to tolerate and we decided to continue breastfeeding. Different clinics have different ways of combining breastmilk/breastfeeding and formula feeding. Our dietician suggested rotating feedings and this worked very well for us. This means that one feeding would be a breastfeeding (or breastmilk feeding from a bottle) and the next would be a PKU formula feeding. We wanted to get his level down and started with two formula feedings for every breastfeeding. As his levels would go up and down through growth spurts for the first six months, we would change the ratio of feedings. Sometimes we would be doing one breastfeeding session for each formula bottle; other times we would have to add in an extra breastfeeding session to get his level higher or PKU formula feeding to get his level lower. As we added food we reduced the breastfeeding sessions so that he could have that phe from food instead of breastmilk. Our clinic was wonderful and supportive. We continued breastfeeding until he was nine months old.

Having two boys with PKU and having exclusively bottle fed one and breastfed one (part time), I will tell you that they are equally healthy and you should work with your clinic to make the decision that is best for you and your family. I am not sure that I was ready to take on the challenges of breastfeeding with my first.