Seeing a mom with her newborn is sure to bring smiles to people’s faces, but seeing Bailey Blaydes on the screen holding her eight-day-old baby had special meaning to a group of women on Emory’s campus earlier this summer.
Though the women range from 12-50 years old, they have something in common: They want to live more fully despite having a metabolic disease.
Blaydes is part of that group. The women have been diagnosed with phenylketonuria (PKU) or maple syrup urine disease (MSUD), which means their bodies lack the enzymes to break down certain amino acids. They’re advised against eating protein-rich foods.
For more than 30 years, Emory’s Department of Human Genetics has brought together women with PKU and MSUD for a six-day experience known as Metabolic Camp. The program blends nutrition education, peer support and rigorous research.
While it may resemble a traditional summer camp — with activities like karaoke, dance parties, game nights and movie theater visits — it serves a deeper purpose: equipping women with knowledge, skills and confidence to handle lifelong dietary management and new treatments.
“There are girls in the camp who have never met another girl with a similar condition, even in the age of social media,” says Rani Singh, professor of human genetics at Emory University. “The community they find here is invaluable.”
Rethinking diet
People with PKU and MSUD depend on expensive medical foods created with specialized formulas that exclude amino acids their bodies cannot metabolize. In addition, they have to cook specially modified, low-protein foods.
“The camp has tasting tables where we get to try different low-protein foods, which I find very, very helpful,” says Jewel Alexander, a returning camp participant.
Cooking demonstrations at the camp are designed to make low-protein foods more approachable.
“My recipes always start with the need to steer away from the heavy use of low-protein modified foods and the ability to buy fresh produce and groceries,” says chef Jeff Masse, author of a low-protein diet cookbook and a national leader in low-protein culinary education.
“Focus on what you can have, not what you can’t,” Masse tells the group.
His sessions encourage campers to rethink the limitations of their diets. Cauliflower stands in for chicken; jackfruit replaces pork in burritos. By the end, many participants are excited to recreate the recipes at home.
Many roads to becoming a mom
While diet is a concern for many expectant mothers, those with PKU and MSUD face special challenges. If amino acid levels are not managed before and during pregnancy, a condition called maternal PKU syndrome can cause irreversible damage to the developing baby’s brain due to high levels of phenylalanine crossing the placenta. This can lead to severe developmental disabilities.
During this year’s camp, Bailey Blaydes shared how she faced pregnancy with a metabolic disease.
During her pregnancy, Blaydes practiced diligent diet control, which was a life-saving measure not only for herself, but for her newborn.
“It was so powerful for them to see that motherhood is possible,” Singh says. “This is why education, research and early intervention are crucial — and why we built this camp.”
At one session, Singh opened the floor for women to ask questions of previous camp participants who are mothers themselves. A number of them spoke about following low-protein diets throughout pregnancy.
“Not all gynecologists are knowledgeable about PKU, so it is important to work with a dietitian and geneticist to get needed care, and you have to advocate for yourself at the doctor’s office,” says Blaydes, an Emory patient who was invited to speak to this year’s campers.
Some had followed strict diets throughout pregnancy; others opted for medications that regulate phenylalanine levels without being on a special diet. Others talked about their decision to adopt children.
“There is no one way to become a mother with PKU,” Singh told the group.
Even for the women who aren’t considering motherhood, Metabolic Camp is a valuable resource and connecting point.
“My favorite part has been meeting new people who know what I am going through and have the same feelings as me,” says Holland Tye, a first-time camp participant.
Photos by Rosalynn Borlaza Blair (Bailey Blaydes with baby) and Solanch Dupeyron (chef Jeff Masse), Emory Medical Nutrition Therapy for Prevention (MNT4P) Program.