John, Sandy & Bethany LaPrad

2004

I guess we should start here. John and I are later in life parents and were thrilled with our pregnancy. After 2 miscarriages we were cautious with this pregnancy and after 2 months of bedrest, and coming a month early, Bethany Joy LaPrad was born in August of 2000. What a beautiful baby! We went home knowing the Newborn Screening had been done and didn't think anything about it. 

The first call came telling us we needed to return to the OB unit to have the Newborn Screening repeated. They reassured us that there were alot of false positives and we shouldn't be worried. We returned, and although I showed the clerk the address where the repeat screening should be sent, she told me they did lots of repeats and she didn't need the form. A few days later we received another call telling us to come back in for a repeat screening. Yes, a third poke to the heel. Seems the first repeat was sent to the state and not to the Metabolic Clinic. We made the third trip and at about 8 days of age Bethany was diagnosed with PKU.

Oh, how our lives changed! So many thoughts went through our minds- will she be "normal", will she have a musty smell, skin problems, gait problems, speech delays? The dietician reassured us that any goal we had for Bethany would not be hindered by her PKU. We were skeptical and asked LOTS of questions to anyone who might know something! We were thirsty for knowledge. 

Our first real reassurance came when she was 5 months old and we attended our first Winter Gathering for metabolic families. She was the youngest one there and we were able to see for ourselves that PKU kids are the same as any other kid. Running, playing games, quesioning, testing, and eating foods that looked very similar to our foods.  Whew, we felt so relieved! We felt that we would be able to handle this after all.

Bethany is now 4 (When Sandy wrote this in 2004) and has achieved all of her milestones. She swims, takes ballet, counts, colors and is starting preschool in the fall. She told me at 2 1/2 yrs of age that her milk comes from the blender and that she has PKU. She is able to understand so much already about her diet and how she will need to eat. As parents we feel that the best we can offer to her is a normal childhood full of memories of the boat, gardening, pets, fun and experiencing all that life has to offer. Her diet will always be a huge part of her life and the day will come when she is managing it on her own. The best thing we can do for her is to provide her education about her diet and encourage her to make good decisions and love her no matter what.