KEY POINTS:

• You have just heard that your baby may have VLCAD. Please understand that the newborn screening is just that---a screening test. Further testing is required to confirm or rule out the diagnosis.
• Most babies who have out of range newborn screens are healthy, and will not be diagnosed.
• If treated early, children with VLCAD can have healthy growth and development.

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Additional Resources

• VLCAD
• VCLAD - RareDiseases.org

Very Long Chain Acyl-CoA Dehydrogenase Deficiency (VLCAD)

What is newborn screening?

Newborn screening is a blood test to check for conditions that might be hidden at birth.To do the screening, a nurse takes a few drops of blood from your baby’s heel soon after birth. This blood sample is required for all newborn babies.

Newborn screening is not the same as diagnostic testing. A diagnostic test can tell with more certainty whether or not a child has a condition. On the other hand, a screening test simply indicates that a child may have a condition. The purpose of a screening test is to find babies that should have diagnostic testing. This means that many children with an out-of-range screening result are healthy. When a child with an out-of-range newborn screening result has a follow-up test result within the normal range, it is sometimes called a “false positive.”

What if my baby needs more testing?

If you are told that your baby needs follow-up testing, it does not necessarily mean that your baby is at risk. An out of range result may occur because:

• The sample was too small
• The sample was collected too early
• The sample was collected too close to a feeding
• The baby was born too early or had a low birth weight

Most babies who have follow up testing for VLCAD are healthy, and will not have VLCAD. However, out of range screening results CAN indicate a disorder, so it is important to follow your doctor’s advice & get your baby tested quickly so that final results can be confirmed.

What is VLCAD?

Very Long Chain Acyl-CoA Dehydrogenase Deficiency, or VLCAD, is a rare, inherited condition. Babies with VLCAD have trouble using fat as an energy source. Using stored fat for energy is especially important between meals and during periods of increased energy demands (fever, stress, exercise). VLCAD is very different for each child. Some children with VLCAD have very few health problems, while other children may have many medical problems.

What does this mean?

Although VLCAD cannot be cured, it can be treated. If further testing finds that your baby has VLCAD, he or she may need to be on a special diet.Sometimes, a doctor will recommend feeding your baby more frequently. This will help to prevent health problems. If treated early, children with VLCAD can have healthy growth and development.

What happens next?

Your baby’s doctor may ask for your baby to have more testing, including DNA testing.You will want to have these follow up tests done as soon as possible. In some cases, you may be asked to visit a specialist and/or dietician. The specialist and/or dietician will talk to you about the best plan for your baby.

What are the signs and symptoms of organic acid disorders?

Some babies with VLCAD never have serious signs or symptoms. Sometimes signs and symptoms may not happen until later in life. Signs and symptoms could include not eating well or having trouble gaining weight, or behavior changes. If you become concerned about your baby’s growth, feeding or activity, please talk to your pediatrician.

What if I still have questions?

We understand that this can be an overwhelming and emotional process. Many families have questions and concerns. The Connecticut newborn Diagnosis and Treatment Network (the Network) is available to put you in touch with the best resource. To reach the Network, you can call 860-837-7870, Monday-Friday, 8:30am-4:30pm. We also recommend the website www.babysfirsttest.org as an accurate and informative resource.

This fact sheet was written for information purposes only. It should not replace medical advice, diagnosis or treatment.