Tyler’s Story: Written by His Mother, Co-Founder of Save Babies Through Screening

Today I drove 45 minutes from my home to visit my son’s grave on his birthday.  I watched my six year old write “I Love You Tyler” in the gravel of his brother’s grave.  I watched my husband carefully straighten each flower put there by our loving friends and family.  I watched balloons that said “Happy Birthday From All of Us” sway in the wind.  I hope you never have to celebrate your child’s birthday at the cemetery.

Tyler

Today at work I received the Fed Ex and Airborne Express bills for our company.  As a mortgage company, we overnight an astronomical amount of packages to ensure that they get to their destination on time.  And on very important packages, we use a local courier service to hand deliver the packages the same day.  It is very important that our packages arrive at their destination quickly and that we can track their arrival.  Why don’t we want use the regular mail for these packages?  Well, we want to be sure that they get to where they are going and get there as soon as possible.  We also need to know who signed for the packages in case there is ever any question.  Many companies do exactly what we are doing everyday because they don trust that the regular mail will get their packages to its destination as quickly and efficiently as these overnight and couriers services would.

Ironically, my son’s newborn screening test, the test that would have saved his life, was put in the regular mail alongside the thousands and thousands of pieces of other mail the regular mail delivers everyday.  His test arrived at the laboratory for analysis 8 days later.  He died 5 days later, 3 days before the test even made it to the lab.  (The state lab is only 15 minutes away from where the blood specimen was drawn.)  Everyday I overnight and use couriers to get important packages from place to place, yet a package that would have saved my son’s life was put into the regular mail.

Tyler_2

Tyler was 9 days old when he died.  Eight days were wasted in the mail and another 4 were wasted because his newborn screening test wasn’t performed until he was 5 days old instead of 1.  In all 13 days of my son’s life was wasted.  God only gave him 9.

It was quite a mouthful to swallow to find out that the results from a simple test called the newborn screening test could have detected the disorder that took my child’s life.  A test required by state law and costs about $11 to screen for all 7 disorders detected for in our state.  And treatment for Tyler’s disorder, quite another mouthful to swallow.  My child would be alive today had he been put on a soy-based formula; a commonly used over-the-counter soy formula that you can buy at any grocery store.  My first-born child, whose is not affected, was on a soy-based formula.  How ironic.

The newborn screening test is often is another procedure that has to be done before a baby is discharged from the hospital.  Parents are never really educated on the newborn screening test or how important it can be to the health and well being of their child.  Many medical professionals take the test for granted.

“It’ll never happen to me.”

“My child doesn’t have a disorder.  He looks perfectly healthy.”

“Not in my family.  We don’t have any history of anything like that.”

I remember those days.  I never thought it would happen to me.  I thought my child was healthy and we had no family history of any thing like this on either side as far back as we can search.  Now I know it can happen because I visited my child’s grave at the cemetery today.

Please take the time today to learn about newborn screening and all you can do to help ensure that it is done correctly.  By being knowledgeable, parents can ensure that the test is performed as it should be.  And if you live in a state that screens for only a few disorders or have older children who were only screened for a few disorders, have your children screened through tandem mass spectrometry today.  It can detect up to 35 disorders, some of which may not present any signs or symptoms until its too late.  People as old as 45 years old have been linked to dying from disorders detectable through tandem mass spectrometry.  Newborn screening is not always just for newborns.

I believe everything in life happens for a reason, even if I don’t understand it.  I may never know why my child was the one.  But I do know that I can help prevent this from happening to your child.

Share your child’s next birthday with them, even if they too are the one.

Tera Mize – Written May 1, 2000

 

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

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