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By Carolyn Pierson
I am happy to write this story about our family, as I'm so very thankful that PKU testing was done in Connecticut at the time of my first son's birth.
I'm the mother of three children with PKU: Russell, age 31; Brian, age 28; and Christopher, age 22. Christopher won a Guthrie Merit Award in 1998. He is a senior at Purdue University. Russell now works at GMAC in Rocky Hill after graduating from the University of Connecticut. He is married and has two sons, ages 2 1/2 years and 2 months. Brian has just started a landscape business. My husband works for a local contractor and I am a secretary for a group of local pediatricians.
Dealing with the Diagnosis and Beyond
When Russell and Brian were young, my husband and I belonged to a group of PKU parents, meeting at Yale New Haven Hospital. We learned many helpful things at these meetings, and also had fun parties. But through the group, mostly we knew we were not alone in trying to understand the diet restrictions of our children. I was most involved with the boys' diets, but my mother would bake things and everyone in my family (a large one) always kept foods on hand that my boys could have in case we stopped by. They were all most supportive.
Soon after the birth of our first son, my husband and I were called to discuss a high blood level with our pediatrician, we were very nervous. In his office, the doctor told us PKU was suspected and we would need another blood test. Since we had never heard of PKU, we did not comprehend what he was talking about. I had to stop nursing and give my new son formula. We came home and cried and wondered what we did to deserve having our first child born with a problem. Why didn't something happen to us, not our baby?
I wasn't able to tell anyone about our baby for a long time. My mother and father and in-laws were the only ones who knew. I wasn't going to tell anyone until I didn't cry when the letters P K U came out of my mouth. I really cannot remember how long that took. I think I told my best friend 5 to 6 weeks after Russell was born
My mother was very supportive, saying "This is a dietary problem: anyone can manage a dietary problem." I think that once I got over the trauma of the word "PKU" the diet was going to have to work. On the other hand, my father was a meat-manager so I grew up having all good quality meats. It was very hard on my dad not to offer the boys a slice of meat when we went to shop.
When my second son was born with PKU, I felt I would lose my mind at times. My local pediatrician, who was wonderful, would say "Good job, mom, you must be doing something right; they look great!" He gave me such moral support. Though he is now deceased, I am very thankful that Dr. Maurice Wakeman was in my life when my children were young.
Raising a Successful Child
When my first two children were born, all my friends were having children also. We would all meet in someone's back yard for lunch picnics or play groups so our children were always around children their own age. I used to say they were on a "special diet" and that was it. All my friends were so good about the diet. If we were going to their home they would make sure they were having something the boys could eat. At home, I always used small plates for the boys because I felt it was good if their plate looked full. One night soon after my oldest son was married, he made the remark that now he could use a large plate! I never knew he noticed!
The diet turned out not to be so very difficult. It seemed as if there was always an alternative food to eat. If ice cream was to be served, the boys could have frozen Cool Whip, popsicles, etc. They ate very "healthy" foods and that was a good way of presenting their meals. I always tried to have a colorful plate of foods for them. None of my friends' children liked all the fruits and vegetables my boys did—my boys ate everything!
When the boys got older, I tried to relate their diet to my diet. I always had a weight problem, so I would tell them they could have so many French fries, crackers, etc. or they could have cereal, fruits, etc., and sometimes this would work. I tried to liken calories to "phe" to help them understand the need for restrictions.
The boys took care of one another, mostly telling me if one of them even thought about eating something not on the diet. But one night before we were going to the clinic to have blood drawn, Russell ate 1/2 of a hot dog. He told me on the way to the clinic! Mostly, they were all very good about the diet restrictions and requirements.
I let the boys drink the formula from the bottle almost until they went off to school.That I felt was a very minor thing compared to everything else.
Since Christopher was born so much later, I felt like I had an only child again and it was hard. Managing two boys was not so bad together, but to start all over again—whew!
Russell and Brian were taken off the diet at age five, as was common when they were young. Consequently, I never had to tell their teachers about PKU. With Christopher, I only listed dietary restrictions, asking the teacher to contact me if necessary. Christopher knew what he could eat by age six, no problem. If I was ever confronted by anyone asking about PKU, they were truly being kind and interested. I found most people are too busy and don't really care. The kids looked all right, so they didn't really have anything wrong with them was people's attitude.
Christopher was fortunate because he had many vegetarian friends. He was born at a good time! He really only had to tell those he wanted to about his diet because he could eat what was offered in school (salad bars were available for school lunches). Because of this, I don't think he hated the diet. He was quite able to tolerate it. For awhile, he went off the diet completely. But then he went back on because he was afraid for his future and felt the diet was worth the effort. He has been very successful maintaining his diet ever since. He is a very motivated and determined young man!
The Yale New Haven PKU Clinic was good to the boys as they were growing up. Dr. Seashore has been with us all the way and has helped us so much. Both she and Crystal Reil, dietitian, have been more than wonderful. Whenever I needed help as the boys were growing up, all I had to do was call or make an appointment and I would have all my concerns subside after talking to them.
A Chance to Brag
Christopher is a very well-rounded young man. He has always had a lot of friends around him, all of whom we care about very much. We just came back from Parents' Weekend at University and were so happy to see Christopher doing so well. We also enjoyed meeting his nice roommates and their parents. Christopher's personality shone early in his life and continues to do so. Now we hope it will help lead him to a wonderful career and happy life.
Reflections of a Parent
It is hard for me to figure how Christopher became such a fine young man. Maybe because he was like an only child given to parents who raised two boys earlier and who had already left behind nervousness, expectations, etc. and thus "let him be. . . " He was a delight from "day one" (and still is). He was very good on his diet, but everyone was comfortable around him with his restrictions because of his brothers before him. There was six years between children, so Christopher had to go everywhere with me because I was very active with the older boys: school, church, library, sports events, etc. I wasn't working outside the home so I volunteered whenever necessary. Chris would nap in his carriage in the school hallway when I helped children read or write. He even did things like helping to plant bulbs at our church when he was young. He rode his "big wheel" all over town. Everyone knew him! He was exposed to everything land everyone, old and young alike.
I really can't say that dealing with PKU changed my boys' lives dramatically. I can't speak for the boys, but I think they really did well with their dietary restrictions and don't feel they had it so bad. They are completely different from one another, but they all get along nicely and each one is a fine young man. September 1967, when Russell was born, was a very hard month for us. But as far as PKU is concerned, September 1998 as I write this, is much much easier! We consider each of our sons very special young men. How proud we are of them and the lives they have chosen for themselves!