How do I care for a baby with galactosemia?

Q: My baby was born with galactosemia. What can I do to keep her healthy?

A: Galactosemia is a rare genetic metabolic disorder affecting roughly one in every 30,000 to 60,000 babies. A baby with galactosemia can't digest the sugars found in milk (including breast milk) and most infant formulas (except soy versions). In babies with galactosemia, the sugar builds up in the body over time and can cause damage to the liver, kidneys, and brain, as well as long-term developmental issues like speech delays, learning disabilities, and problems with balance or physical coordination. Fortunately, removing all milk-containing products and anything else with galactose from your baby's diet immediately can minimize the risk of these problems. These days, most babies are screened for galactosemia at birth, so you can start taking these precautions right away. (Galactosemia used to be a much more serious problem before widespread infant screening tests, as the condition often went undetected.)

You'll need to be extremely cautious about what your baby eats, reading labels carefully for ingredients like milk, casein, dry milk solids, lactose, curds, and whey. If your child requires medication at any point (even for a simple ear infection), ask your pharmacist for a detailed list of the drug's ingredients, since many contain lactose as a filler and it's often not listed on the package. And down the road, once your child starts having playdates, make a list of the foods he should avoid, laminate it, and put it in his backpack, so he can refer to it when he (or another grown-up) has questions. It will be important to monitor your child's development closely (your pediatrician will probably want to do regular blood tests as well) and be ready with the right treatments and developmental interventions if trouble does arise. But with proper monitoring and a strict, dairy-free diet, many kids show no signs of the disorder at all.

 Copyright 2009 Meredith Corporation.