Cook for Love: Low-Protein Recipes

When we first held our daughter in our arms, my husband and I became a family. She looked just like the Gerber baby – chubby and the picture of health – and we were walking on air. Six days later we fell, and fell hard. We received a phone call from the Inherited Metabolic Disease Clinic at Westchester Medical Center. Her newborn screening tests had indicated that there was a problem, and we needed to come in right away. It was a Friday afternoon before a holiday weekend, but someone, we were told, would be waiting for us – never a good sign. We were told that our baby had phenylketonuria (PKU), a rare genetic metabolic disorder, and that she would need to be on a medically restricted diet for life – or she would suffer brain damage. Our world came crashing down. Our daughter’s neurological integrity was at risk and what she ate (or did not eat) would greatly determine her future. Like all parents of newly-diagnosed infants with PKU, I struggled to figure out what to feed my daughter. I was taught how to carefully measure and calculate her phenylalanine intake on a daily basis. What no one taught me was how to cook for her. Books, articles and professionals all recommended introducing low protein foods early so a child could develop a taste for them – but did this mean she was condemned to eat foods that I would not find palatable? I looked into my baby’s eyes and promised her that PKU was not going to get in the way of her enjoyment of food. I soon realized that this promise meant that I had to take on a job I never expected (and, honestly, one for which I was not qualified): personal chef. In the beginning, I had nothing to show for hours worth of labor except for a kitchen that was in a constant state of disaster. I had no room to put another pot on the counter, a child screaming from hunger and nothing for dinner. I cannot begin to tell you how many times my husband came home from work to find me sitting on the kitchen floor in tears. He would quietly do the dishes, put our daughter to bed and pour me a glass of wine (definitely a keeper). I bought every kitchen gadget ever known to man (after all, you never know when a two year-old might need a pizelle or a pierogi). If the television was on and it was not Sesame Street, it was a cooking show. Cookbooks and culinary magazines were my version of light reading. I became fascinated with the science behind baking. I thought if I could understand the “how” and “why,” it would help me in adapting recipes to suit the low-protein diet. After years of fiddling, hundreds of attempts and thousands of tears of frustration, I finally started to experience success. While pleased with the progress that I made, I knew it could go further. I recognized that I needed the expertise of others. I enrolled in the Chef Training Program at the Natural Gourmet Institute for Health and Culinary Arts in New York City, one of the only vegetarian-based culinary schools in the United States. Our final ‘graduation’ project was a Friday Night Dinner, where the school converted into a restaurant that seated about one hundred people for dinner. We prepared a four-course gourmet vegetarian meal, and I adapted it for the PKU diet. As I stood in front of all of the diners and saw my daughter’s smile, I realized I could finally get up from that long, hard fall caused by a few drops of blood on a sheet of paper and a dreaded phone call. I had gained the skills and confidence I needed. I had let go of the resentment that I had at always being stuck in the kitchen, and re-established the love of cooking I once had. But most importantly, I honored my promise to my baby girl. It only made sense to find a way to share what I have learned and help an underserved population experience the joy of food – a joy that most are able to take for granted. My list of recipes have expanded with my waistline, but it was always my hope to create a space where this incredible low protein community could share their recipes was well. Thanks to our merger with PKU News, the technology behind How Much Phe, we were able to join forces to create this new site. The organization is called Cook for Love, because whether a parent of a child with PKU, a young woman struggling to get back on diet so she can have a healthy baby, a grandparent, an aunt, uncle, boyfriend, girlfriend or friend, that is what you must do.

Brenda Winiarski