Caring for a baby with aromatic l-amino acid decarboxylase (AADC) deficiency can be very difficult. Among other challenges, infants with this disorder are often born with very weak muscle tone, and may have difficulty suckling, swallowing, and nursing.
What causes feeding difficulties?
Infants with AADC deficiency have weak muscle tone from birth, making suckling and swallowing difficult. They may also be prone to gastroesophageal reflux disease (GERD), which may be evident in them refusing to take formula. This can make it difficult to determine how much milk your baby is getting.
Babies with AADC deficiency also may not wake up crying when they need to be fed, as healthy infants usually do. They may not be able to muster the strength to cry, or simply be unable to signal their needs.
Here are some tips for parents or caregivers of babies with AADC deficiency to help ensure the babies receive all the nutrients they need:
Talk to the experts
Ask your baby’s physician and registered dietitian to help you determine the best diet and feeding schedule for your baby.
Some babies may need additional supplements to compensate for the fact that they are eating less. In extreme cases, hospital intervention may be necessary.
Consider speech therapy
Parents and caregivers can work with speech therapists to learn exercises to help their baby strengthen the muscles involved in swallowing and nursing. Many hospitals also have a specialist to discuss feeding problems and possible solutions.
Keep a feeding schedule
Record each time your baby was fed, and estimate how much formula or breast milk they drank. If they spit up after feeding, record how long after feeding this happened. If your physician or nursing specialist offered recommendations, record what you tried and whether it worked.
Discuss your baby’s feeding schedule with your doctor and dietitian. They can help determine whether or not your baby is getting enough nutrition.
Other treatment options
If your baby cannot take in enough nutrition through bottle or breast-feeding, your doctor may recommend a feeding tube or a PEG (percutaneous endoscopic gastrostomy), in which a feeding tube is surgically connected to the stomach. Both bypass the mouth and esophagus, so that food or medication can be delivered to the stomach directly.
Last updated: Jan. 29, 2020
AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.