Tyler's
Story - The Beginning
This is a personal story
shared by a family whose child has galactosemia.
Our second son, Tyler Wayne, was born 8 lbs. 3 oz. on May
1, 1998. He appeared completely healthy and was put on regular formula. He fed
well and was discharged from the hospital at 24 hours of age. Our discharging nurse
brought in numerous forms for us to fill out and go through. One form was a waiver
not to perform the newborn screening test (NBS), sometimes referred to as the PKU
test.
The nurse stated that because Tyler was only 24 hours old, the NBS was a "useless prick in the foot" because the test was inaccurate before a child is 48 hours old. The NBS was arranged to be performed at the pediatrician's office when Tyler would be 5 days old.
When we took him in for the test, the doctor realized Tyler
had jaundice and performed a test for that as well. His jaundice level was 29.8
which is critically high. Tyler was admitted back to the hospital for four days
under bili lights to bring his jaundice level down. While at the hospital, he became
increasingly more lethargic, non-responsive to pain, and continuously vomited
feedings. All these complaints were dismissed because they seem to be such
"common" symptoms for newborns. Upon recommendation of his pediatrician,
Tyler was discharged from the hospital to continue the bili lights at home with an in-home
light unit.
Once at home, he began vomiting violently. After a call to the pediatrician, we fed Tyler Pedialyte as directed, put him back under the bili lights and went to bed ourselves. A few hours later we sprang out of bed concerned because Tyler had not woke up for his next feeding. When we tried to wake him, he was extremely lethargic and wouldn't respond to any stimulation. We rushed him straight to the emergency room of the same hospital we had left only 10 hours before. The ER staff worked with him approximately 7 hours just to get him stable enough to transfer to the local children's hospital which was only 20 minutes away.
Tyler died at the
children's hospital on Mother's Day, May 10, 1998 - a day we will never
forget. His death resulted from e-coli spinal meningitis and
septicemia. We were able to hold him in our arms and tell him it was
all right to let go and how we were so proud of his strength for
fighting. We said goodbye as he struggled for his last breath.
Five days after his death, the results of his newborn screening showed
positive results for galactosemia. It had taken ten days to receive
the results of Tyler's newborn screening test. In fact, it was not
even received at the laboratory until three days after his death.
We had never heard of galactosemia and have since found out that a lot of other people including health care professionals have not either. This is the reason we created the Tyler For Life Foundation (now Save Babies Through Screening). We want more people to know about galactosemia and the importance of having the NBS done on every infant as soon as possible. Our son was seen by a multitude of physicians, hospitals, and nurses, yet no one ever suspected that our son had galactosemia nor recognized the signs of his fatal septicemia or meningitis. The system as a whole failed our son. In our opinion, Tyler died because of inadequate knowledge causing repeated failure to recognize signs of three different underlying diseases and delays in his NBS test results. If even one of these discrepancies had been avoided, it is possible that our son may still be alive. Nevertheless, we can not change what happened to our son. But we hope that in sharing our story that someone else's child may be spared.
UPDATE - Happy Birthday Tyler, May 2000
It
has been over four years now since Tyler's death. Yet it feels like
just yesterday he was here in our arms. We still think of him
everyday and are truly thankful for the nine wonderful days that we were
able to share with him in this life. It is only by God's grace have
we ever been able to survive after Tyler's death. As hard as his death has been,
we wouldn't trade anything for those few, short precious moments - it was
worth it all. We love you,
son. And we miss you.
May God bless you,
Tera Mize
Written September 1999 by Tera Mize
Mother of Tyler, galactosemia (5/1/1998-5/10/1998)
and Brendan, unaffected, age 9
Tyler's Case Study done August 2005 by SimulConsult
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