By Dennis Smith
(Dennis Smith is a PKU grandparent, artist and writer living in Highland, Utah County. This story was written for the Deseret News, for which he writes a regular column.)
"And he . . . Gave the loaves to his disciples, and the disciples to the multitude. And they did all eat, and were filled." --Matthew 14:19-20Monday, Oct. 16, 1 a.m.: I had just finished watching Ted Koppel on "Nightline" and gone to bed. But while brushing my teeth, I heard a little bell dinging on the microwave out in the kitchen.
That would be Rachel getting up to warm a bottle for the baby. She had driven down in the evening and had decided to stay over. Earlier, I poked my head into the living room and saw that she had settled on the couch. I could also hear Alyssa breathing in the corner in the foldaway crib that Veloy bought last year for the grandkids.
It had been a tough go for Tim and Rachel this past few weeks. A few days after Alyssa was born, they learned that her PKU test had come back high and that she needed to be checked again. This is the test where they prick babies' heels for blood before they come home from the hospital. Every mother is familiar with the test because it pains them so much to see their baby's foot poked.
Alyssa's second test showed that her phenylalanine levels had tripled, confirming that she was the one of every 10,000 to 15,000 babies born who are diagnosed with PKU. So far, she is only the second PKU baby born this year in the state of Utah.
We were pretty somber the morning we went with Tim and Rachel to the state medical examiner's offices to be briefed about Alyssa's condition. A whole contingent of experts was there to meet us, including the state specialist responsible for PKU babies, a microbiologist and a nutritionist, as well as Tim and Rachel's regular pediatrician.
In a nutshell, we learned that PKU (short for phenylketonuria) is a condition where the body is not able to properly break down the amino acid phenylalanine, which is present in all foods containing protein. Over time, it rises to dangerous levels. Unless it can be lowered, the high buildup can be particularly damaging to the protective sheathing around the cells in the brain. In the past, PKU typically resulted in serious mental retardation. However, in the early 1930's, a Norwegian biochemist and physician, Dr. Asbjørn Følling, discovered the cause of the disease after a mother of two young retarded children came to him. He uncovered the biochemical basis for PKU and learned how to monitor it.
It has only been in recent years (since the early1960's), though, that a reliable blood test to diagnose PKU has been available. During these past weeks, we keep thinking of the 10,000 mothers who are willing to have their baby's heels pricked in order to find the one baby like Alyssa who comes along. What seems a small sacrifice for them looms large in our family lately, leaving us grateful to more people than we can ever repay.
If caught early, it is possible for PKU children to live completely normal lives. A protein formula has been developed that has the phenylalanine removed while still providing the other amino acids necessary for proper growth.
There will be some inconveniences for Alyssa throughout her life. She won't be able to eat hamburgers at McDonald's and will have to weigh each french fry. They say, too, that her life-saving formula will be quite boring at times. But at least it is available.
In fact, that's what was warming just now in the microwave.
Looking into the kitchen, I see that Rachel has Alyssa on one arm and is testing her bottle with the other. I ask her if I can feed the baby so she can get some rest. She concedes.
I hod Alyssa in front of me and study her eyes. She turns her head this way and that, then looks me full in the face. I pull her in close and put my nose against her neck. Babies smell so nice when they aren't smelling stinky. For the moment, Alyssa is being nice.
I settle in Veloy's rocking chair in the family room with a bottle and burp cloth. Out through the window the world is asleep except for a dim rim of fluorescence over the trees where Micron's night shift is in full gear.
I hear Alyssa sucking away at her bottle and I look down into her face again. Now she is squirming and pushing the nipple away, so I sit the bottle on the edge of the couch, wipe the white liquid from the edges of her moth, and lift her to my shoulder for a burp.
As I pat her back and listen to her squeak, I study the half empty bottle on the couch.
Somewhere out there, someone knows how to make this stuff. Someone else knows how to package and preserve it. Someone ships it, and up in the pharmacy at Primary children's Medical Center, someone stores it. There is also someone to teach us how to use it. And then, there are all those mothers who let their baby's heels be pricked. All for the one in 10,000.
The Bible speaks of 5,000 and the miracle of the loaves and the fishes.
But here, at 1 a.m., in the dim light case from a single bulb above the kitchen sink, a modern miracle spills over unexpectedly into my life, a miracle fashioned from the vision and labors of hundreds of people I will never know but for whom I will always be grateful.