Deadly Delays: One disease, two babies

"Newborn screening tests aren't performed on weekends in 27 states". That is disgusting and my heart is broken.

That is unacceptable. A baby should not have a time limit on their life when they are not in control of these things.

There needs to be a weekend shift in the labs.. It is not fair.. To loose your child when it could have been saved.. How horrible.. Please open labs on weekends...

For those tests to be most accurate, babies must be fed before the specimen is collected at 24 to 48 hours of age. If the baby is admitted to the NICU right after birth, we collect blood specimen #1 upon admission, #2 24-48 hours after feeding or TPN fluids are started, then #3 at 30 days of age. Occasionally even more tests will be done depending on what previous testing may have revealed or if the infant has undergone numerous blood transfusions during their hospitalization. Usually these infants started out sick enough to need several days, weeks, or months of hospitalization, so they will still be in hospital when results return, then they can swiftly treated. My concern is for the healthy babies that stay in hospital barely 24 hours and only get one test. If that baby has been feeding poorly and the blood specimen was done "a little early" in order to expedite discharge in a busy post partum unit, that infant may fall through the cracks and his/her disorder get missed altogether until it is too late for help. Some of those diseases are very rare, but if your baby is the one who has one of them, it's very important to find out asap. We draw blood 7 days a week, 24 hours a day, but we don't process the specimens...they go to the health department. We have no control over how things are done there. Parents: keep making noise, keep posting your videos, keep crossing your fingers that the politicians will listen to you & find funding to process weekend newborn tests! I wish you all the best!

This mad me both sad and mad. Sad because a family lost there new baby. And mad because he could have been saved. I thought all diagnostic labs were open 24/7 to know this really boils my blood. And at the same time it makes me affraid for other families when they have there kids. Thank God my grand daughter was born on a Thursday and got her results the next day, nothing was wrong thankfully she's a healthy 7 month old girl. I'm sorry families loss babies it's super sad. I have 6 kids and got lucky none of mine passed away I thank God everyday for that. My youngest is only 10yrs old. My oldest is 20 yrs old and the rest are in between . RIP baby boy. And I'm glad the other baby is alive and well bless his little heart.

This is not acceptable that all babies are not tested the day they are born! These babies deserve a chance to live a full and happy life!

6 years later, please, for the love of God, tell me this is no longer an issue??

I would have pressed charges against the hospital

I was about to cry no one should go through these thing's.😔

This is so very sad that the one family lost their baby but good the second family saved their baby!! RIP Noah:( your a tiny angel with wings now:(

Also parents really need to be aware that if the lab is open parents pls please 🙏 make sure that the lab has a courier to pick it up bcause just bcause the lab collects the specimen it doesnt mean they have a courier to pick it up for process and depending on what kind of specimen and TEST bcause some specimens can wait the 42 48 hrs but not all so please ask the lab worker if the courier can pick it uo same day. There are a lot of people out there that do not know this information and they assume that bcause the lab is open that day that it will be picked up. Pass it on teresa Robertson RN

THE HEALTHCARE SYSTEM WE HAVE IS BROKEN!!! AND THEY DON'T CARE WHO THEY HURT! DISGUSTING PEOPLE! I am so sorry for your loss. There is no such thing as a price tag on a life.

My brother died when with a rare disease and he died two month later it hurts to think about it. but I now have two kids that were born healthy.

Wow so profound.

My 5 year old daughter was born with one of the conditions from the newborn screening test. Hers is Congenital Hypothyroidism (totally void of a thyroid gland) and she will be medicated every day for the rest of her life. If she wasn't medicated, she'd have a low IQ, wouldn't grow, etc (it used to be called Cretinism before the PC term came about). Luckily she's normal. It'd be a different story had it not been for the newborn screening test though!!

It is an outrage that states do not require the labs have on call staff to run these tests. Lower taxes apparently trump right to life. And how hard would it be to have the ability to test for rarely occurring but fatal genetic conditions in every community or area?

Mr & Mrs Wilkerson, I am so sorry for your loss.. I cannot imagine. God be with you... It is sad that the labs were cold and your son could be alive today.. Very Sad.. But one day you will meet again. It is God's promise. My heart is so sad for you and your loss... God be with you... Warm Hugs. ...

RIP sweet baby.

That is so sad. Yes, these babies deserve this. They all need to have blood screened on day they are born. This 1st time I ever heard of this and I watch baby videos a lot. All states need to do this screening when a baby is born. No matter weekend and holidays.

Beautiful, Noah❤❤❤