Desiree shares her personal experience as a PKU mother and her journey to motherhood. As a 29-year-old woman with classic PKU, she lives with her partner and their 12-month-old son in Crailsheim, Germany. Here she talks about the challenges and successes she encountered during her pregnancy.
The beginning of the journey to motherhood
After five years of being in a relationship, Desiree and her partner decided to fulfill their desire to have children. Although they were excited, they also had concerns: the strict diet, the discipline, and the constant monitoring of her Phe levels. The main concern was to deliver their baby safely and healthily. Before they started trying to conceive, Desiree made an appointment at her clinic to make sure she was well prepared.
Starting well prepared: the medical retreat
Desiree began her preparation with a four-week medical health retreat, which helped her to completely reset her PKU diet. "This was new territory for me. It took me four months to get back on the PKU diet," she says. Finding the right Phe tolerance and establishing the ideal calorie intake was challenging at first. But with patience and the right guidance, the process slowly started to fall into place.
The preconception diet and the right Phe levels
Desiree started with a Phe tolerance of 500 mg per day and aimed for a value of 2-6 mg/dl. This preconception diet was essential to prepare for a healthy pregnancy. "I set myself a limit of 300 mg of Phe per day, but then I started with 500 mg per day and reached levels of up to 4 mg/dl," says Desiree.
The joy of a positive pregnancy test
When Desiree finally got her hands on the positive pregnancy test, it was a moment of pure joy. But the care for the baby always remained. "I scheduled important appointments with the gynecologist and immediately started following my low-protein diet," she says. She was supported by her partner, who helped her with low-protein cooking and household chores. This was critical for maintaining a balanced and healthy diet.
Following the diet during pregnancy
During her pregnancy, Desiree had an average Phe level of 4.5 mg/dl, which was ideal. Still, the values sometimes varied, which worried her. However, she found that a temporary increase in Phe was no reason to panic. "If your values exceed 6 mg/dl, that's normal. Make sure you monitor your blood levels properly," says Desiree. She also learned that a value below 2 mg/dl was more of long-term concern than a value above 6 mg/dl.
Prenatal Care and Organ Research
Desiree had a detailed organ exam around the 20th week of her pregnancy to check on her baby's health. This is a standard examination for PKU mothers, as their babies have an increased risk of heart defects. "It was fascinating to see my baby in 3D and admire his little toes," says Desiree. The examination was medically necessary and reassured her about her baby's health.
The birth of Lemmy: a healthy miracle
Desiree's pregnancy ended with the birth of her son, Lemmy, via cesarean section. "Lemmy makes us the happiest parents in the world every day," Desiree says with a smile. Despite the challenges of the PKU diet, she has found her pregnancy journey to be a valuable experience.
Tips for other PKU mothers
Desiree encourages other PKU mothers to be well prepared and to be fully supported by their care team and partner. "You are not alone in this journey and dare to ask for help. There are great resources and products to help you eat a healthy diet," she says.
