Each year, approximately 1 in 14,000 newborn babies are diagnosed with PKU. While this new diagnosis can be scary and upsetting, the NPKUA wants to assure you that your baby can and will grow up to be a healthy individual that has every opportunity available to them in life. The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. We hope you find comfort, information and resources on this site, and invite you
to visit us often.
We hope the following tips help you as you begin to make sense of a PKU diagnosis and what it means to your family.
First, congratulations on the birth of your new baby! We know that a new diagnosis for PKU can be a time of uncertainly and even sadness. Please remember to celebrate the new life of your baby. PKU is manageable, and you have a whole community here at the NPKUA to give you resources and support.
One of your most important partners in dealing with PKU is your clinic. There are approximately 200 metabolic clinics around the United States that provide medical treatment and services for PKU. To find a clinic near you, go to our Clinic Locator on the homepage and click on your state.
Your physician and dietician will monitor your baby’s protein intake in partnership with you to ensure that he/she stabilizes their blood phe level and keeps it at a certain level for optimal growth and development. You can still breastfeed. Your dietician will work with you on creating a feeding plan for breastfeeding and supplementing with the medical formula.
It can take at least a few months to stabilize your baby’s phe levels. This is completely normal, and their levels and phe intake may also slightly adjust over their life. Phe levels can also rise when your child gets sick. We know it’s difficult not to get upset when your baby’s levels fluctuate, but please be assured that damage from high levels only occurs when babies are off treatment for a significant amount of time.
Your baby will still be able to do all of the things you have imagined or dreamed about – they can still pursue higher education, find a rewarding job, get married, have kids of their own, etc. Yes, your life will become a “new normal,” but PKU will become just a small part of who they are.
While no one wishes to have their child be diagnosed with PKU or any other disorder, many children with PKU develop important life skills early because they have to learn how to take responsibility for their diet. This means that many children with PKU create lasting life skills in self-discipline, responsibility and accountability that helps them to become successful in life.
Get involved. Join your local PKU organization click HERE. Join the NPKUA click HERE. Talk to other parents. Meet with adults with PKU. These people will become an important resource.
There will be challenges. There will be struggles. There will be difficult times. The best thing you can do during these times is to reach out for support from the PKU community. We are here with you every step of the way.