8 THINGS EVERYONE SHOULD KNOW ABOUT PKU

There is a lot to worry about and prepare for when having a new baby. From picking a new name for your baby to choosing the right diaper brand, parents are faced with many stressful decisions they will make for their new baby. ​

Luckily whether to do a newborn screening test isn’t a choice a new parent will have to make. Newborn screening tests are now required to be performed on all newborn babies but there was a time not so long ago that the screening was optional and may disorders went undiagnosed in newborns, which resulted in permanent mental disorders.  PKU is one of the many genetic disorders that is on the newborn screening. If your baby is diagnosed with PKU it can be scary as a new parent. Understanding the condition and what to expect for your baby’s life is a lot to take in. There are 8 things listed below you should know about PKU listed below:

1. Early diagnosis of PKU birth can help prevent some serious problems, such as brain damage, organ damage, and more. Therefore, it is now required that all newborns are tested at birth for PKU.

2. PKU is a genetic metabolic disorder that greatly reduces the ability of those affected to metabolize phenylalanine, one of the amino acids
in protein. People with PKU must watch all their protein intake.  They are only able to have certain levels in their blood to maintain good health.

3. About 1 in 10,000 to 15,000 babies is born with PKU each year in the US.

4. PKU is inherited. This means it’s passed from parent to child through genes. Both parents must be a carrier of PKU for the child to pass on PKU. Most parents don’t know they are a carrier of PKU until they have a child with PKU.

5. PKU is diagnosed through life saving Newborn Screening, it checks for serious but rare conditions. Some countries still don’t require this newborn screening.

6. Babies with PKU get a special protein formula that has reduced phenylalanine. They can also do limited breast feeding. As you baby starts to reach the stage of eating solid foods their diet will always remain very low protein.
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7. In the early 1960s, Dr. Robert Guthrie developed the “heel-prick test,” where blood is taken from babies at birth and screened (now more than 77 diseases.
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8. If your baby has PKU, he may need testing as often as once a week or more often for the first year of life. The protein levels in your child must be closely watched to make sure the blood levels are maintained. PKU is a life-long condition that does not have a cure. Childhood is the most critical time in life that the diet must be kept. As an adult, it is still important to stay on the diet or negative conditions like headaches, confusion, foggy brain and overall health can be an effect.