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Newborn Baby's Health

About PKU
About Maternal PKU
Healthy PKU Pregnancy
PKU and Genetics
Newborn Baby’s Health
PKU Nutrition & Recipes!
PKU & Pregnancy Resources
Maternal PKU Research Study

As a woman with PKU, having a baby is a real accomplishment. Here are steps you can take to keep your baby healthy after he or she is born.

Once my baby is born, how can I find out if he or she has PKU?

When your baby is one or two days old, a clinician will take a blood sample from her heel to send to a state laboratory. This is standard for all newborns in the USA. At the lab your baby’s blood will be screened (tested) for various disorders. Some hospitals may also take a blood sample from your baby’s arm and send it to a special laboratory for testing. In either case you should be contacted about the result of the test in a few days. If the test shows that your baby’s phenylalanine (Phe) level is normal, it means that she almost certainly does not have PKU. If the Phe level is high, your baby probably has PKU. Some doctors may wish to test your baby a second time to be sure that the test results are correct.

After my baby is born, should I continue to stay on diet and on formula?

Definitely yes! This will help you keep up your energy to take care of your newborn baby. It will also help you to stay focused and organized in caring for yourself and your family.

What if the lab test shows that my baby has PKU too?

As you know, PKU in babies, children, and adults can be treated with a special protein restricted diet, and with special formula supplementation. This treatment prevents the build up of toxic phenylalanine (Phe) levels, and means that your baby can develop normally, and grow up to lead a healthy life. The diet is usually covered by insurance. If your baby does have PKU, read this guide — PKU: A Guide for Parents of Babies Recently Screened, and schedule an appointment with your baby’s pediatrician and metabolic specialist.

Can I breastfeed my baby?

Yes! Studies show that breastfeeding has many benefits for you and your baby. If you are a woman with PKU, you can safely breastfeed your baby. Your breast milk contains a little more Phe than if you did not have PKU. You do not need to be on a PKU diet yourself in order to breast-feed, although it is recommended that you stay on diet after the birth of your baby for your own health.

If your baby does not have PKU, this slightly higher amount of Phe that your baby receives in your breast milk will not increase the Phe level in her body.

If your baby does have PKU, she will need to be on a diet for PKU.  Schedule a visit with your metabolic specialist to learn how best to feed your baby. If you would like to breast-feed your baby with PKU, you may do so in combination with feeding a special formula for babies with PKU. Your PKU clinic will guide you on the amount of breast milk and PKU formula that is right for your baby. 

What’s the difference between PKU formula and regular baby formula?

PKU formula and baby formula have very different ingredients. Your PKU formula is specially made for adults who have PKU, and who have trouble metabolizing (changing) Phe. This special formula would not be healthy for a baby.  Talk with your baby’s pediatrician about her nutrition, and about your approach to feeding her.

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