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Classic Galactosemia: A Day in the Life

  •  On an average morning, Beate Weiss-Krull wakes up and makes breakfast for her two little girls – Alena who is eight years old and Mia Rose who is six years old. The girls love freezer waffles, pancakes, and toast. Alena’s favorite toppings are vegan butter and jam, but Mia Rose prefers honey. The girls enjoy a smoothie or milkshake with breakfast and then head off to school. After school they usually stop by the playground where they love to play on the monkey bars, before coming home and starting their homework. Alena and Mia Rose lead the lives of any normal elementary school children, despite the fact that both of these little girls have classic galactosemia that was diagnosed through their state newborn screening program.         

    The Weiss-Krull’s look at classic galactosemia as an important part of life but not what defines them. Classic galactosemia is an inherited condition in which the body is unable to properly digest galactose, a sugar found in all foods that contain milk.  Children with classic galactosemia cannot eat any foods that contain milk. Beate Weiss-Krull believes that it is important to inform children about their condition, but still allow them to experience new things and be regular children. She has learned not to panic if her children are around milk products.

    When the Weiss-Krull’s oldest daughter Alena was born, they had never heard of newborn screening before. Beate happened to pick up a brochure that described the newborn screening process, so she asked the nurse at the hospital about it. It turned out that the hospital had forgotten to do the test so the Weiss-Krull’s requested it before leaving the hospital. Alena was diagnosed with classic galactosemia on the sixth day of her life; however, she was already in the hospital because she had E. Coli meningitis. Alena’s newborn screen was processed extremely quickly because another family near their hometown had a child diagnosed with classic galactosemia. That family was expecting their second child, so the doctor’s were on the look-out for it. Since classic galactosemia is very rare, the doctors were shocked that they found another case while looking for a different family’s results.

    The Weiss-Krull’s were worried about Alena’s diagnosis, but figured if she could beat E. Coli meningitis, she could live with having classic galactosemia. They spoke with their pediatrician, a metabolic physician, and a dietician, and did research on their own to inform themselves of how best to care for their daughter. Fortunately, the Weiss-Krull family found allies in a family living in Tyrol in Northern Italy who have two children affected with classic galactosemia. As new parents to a child with classic galactosemia, they thought that the best thing to do for their daughter was to not have any milk products in their house. After speaking with the family from Italy, they were shocked to learn that the parents put milk products alongside milk-free products on their kitchen table, and the children know which foods are safe for them to eat. The Italian family told the Weiss-Krull’s about their philosophy that their children needed to learn what was safe and not safe to eat from their parents so that when they went to school or ate at other people’s houses they knew what was okay for them to eat.

    When their second daughter, Mia Rose, was born the Weiss-Krull’s were told that there was only a 1 in 4 or 25% chance that Mia Rose would also have classic galactosemia. The obstetrician in the hospital was prepared with soy milk and placed large labels on Mia Rose’s crib that read “DO NOT GIVE MILK – SOY ONLY.” The doctors caring for Mia Rose were the same doctors who cared for Alena when she was born so they had experience taking care of a newborn who could potentially have classic galactosemia. Since Oregon does not screen for all genetic conditions, the Weiss-Krulls opted to pay for a private newborn screen that is more extensive than the standard newborn screen done routinely by hospitals. Mia Rose’s cord blood was sent to a metabolic clinic to expedite the diagnosis and sure enough she tested positive for classic galactosemia.

    The second time around, although the Weiss-Krull family was hopeful that Mia Rose would be in the unaffected 75% and not be diagnosed with classic galactosemia, the Weiss-Krulls were much more prepared to care for a child with classic galactosemia since they had experience caring for Alena, as well as their friends in Italy whose children were a few years older who they could rely on for advice. The Weiss-Krulls chose to use the European approach for the girl’s diet because it allows them to eat foods such as fruits, vegetables, legumes, gargonza beans, and thirty cheeses that are much more restricted on the American diet. They still check in with a dietician to make sure the girls’ levels are in check whenever they introduce a new food or make a change to their diet and encourage everyone to check with their own healthcare team before making any dietary changes.

    Beate Weiss-Krull is an avid blogger and uploads photos and descriptions of her tasty creations that she makes for the girls that use milk substitutes instead of milk products. You can find her blog at : http://www.galactopdx.blogspot.com/.

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