The Importance of Newborn Screening
On June 30, 1998, my nine-month-old son, Noah, died. The disease that killed him is called LCHAD, and it is one of about 80 known metabolic disorders. Though this disease has no symptoms, it is completely detectable with a simple heel-stick blood test at birth, now known as Comprehensive Newborn Screening. Had we known about Noah’s metabolic disorder, we would have been able to treat it…and today I would have four living children instead of three.
On Monday, December 7th, The Doctors will be discussing the importance of comprehensive Newborn Screening with special guests, Scott and Renee Baio. Opening the show will be the Save Babies Through Screening Foundation’s (SBTS) produced Newborn Screening PSA, featuring Scott and Renee Baio. Tune in to see Scott and Renee visit a brand new mom at the hospital and be there for the moment the baby gets his comprehensive Newborn Screening. Then, the panel of doctors, along with Scott and Renee, will discuss how screening regulations are different throughout the United States and what can happen when babies aren’t screened properly. This episode could save a life; you won’t want to miss it!FOLLOW THIS LINK TO CHECK YOUR LOCAL LISTINGS FOR AIRING TIME AND CHANNEL
Newborn screening is a vital public health activity that is essential for preventing the devastating consequences of certain metabolic, hormonal, genetic and or functional disorders not clinically recognizable at birth. If all infants are diagnosed and treated early, serious problems including disability and even death can be averted. Disparities among states screening tests persist, which could have dire consequences for an infant diagnosed with one of these rare and extremely serious birth defects. Early diagnosis and proper treatment are essential and can make the difference between lifelong impairment and healthy development.
“With all the statistics, politics, and government budgets, it is sometimes easy to overlook what newborn screening is all about – saving lives,” says Jill Levy-Fisch, President of Save Babies Through Screening Foundation. “This show is a great education and awareness opportunity for the more than 1 million viewers that typically watch the show. We are so thankful to Scott and Renee for all of their efforts to spread awareness of newborn screening. This also means that the SBTS Newborn Screening Public Service announcement will be seen by more than 1 million viewers on Monday – wonderful!”
The Doctors TV Show produced by Phil McGraw and his son Jay McGraw, talks about health and medical issues. The Doctors is hosted by ER doctor and The Bachelor contestant Travis Lane Stork, with pediatrician Jim Sears, obstetrician/gynecologist Lisa Masterson, marriage and family therapist Tara Fields, and plastic surgeon Andrew Ordon.
Thanks to you, both our boys were tested at birth. But, I had to ask for it to be done because it wasn't part of the normal routine.
Noah had the best smile and was such a little love bunny.
Hugs!
I'm so very sorry for your loss. We are the "lucky" ones to have the most common metabolic disorder – PKU. The first disorder to lead the way with Newborn Screening.
Thank you so very much for this post – I am going to link to you right now. This is so very, very important, and I think that OBs do not stress the importance of the tests enough.
Testing has come a long way, but there are so many people left to educate. Linking away…
So sorry to read about your little baby. I gave birth to my son almost 25 years ago. I never asked about the test because I never knew about it until I saw them do it on my son. That is when I learned about it. The hospital did it as a routine. Thank God.
Thank you, and thank you to Em where I found your link. My baby is due in January, and I will be sure that the tests are done. I know it saved my neices life, as she was born with Cystic Fibrosis which was discovered much the same way.
Thank you again for sharing your life to help others. This is a very important issue. My first baby had an abnormal PKU six years ago and was later diagnosed with Thalassemia. We have been very blessed and his symptoms are few and manageable, and our other kids have tested negative. I know that God gives us challenges and strengthens us through them, but whatever knowledge we can gain to guide us through can help give peace.
Melanie
Hi Sandy,
Sorry to hear about the baby, here in India it is still not part of the normal routine to do newborn screening. Though there are some excellent labs available to do genetic disorder testing. Parents need to specifically ask for newborn screening to be conducted.
Thank you for the information. There are still some states here in the U.S. where parents need to ask specifically for it, too. Many do not know to ask.