In 2001 I lost my baby cousin, Nora, at the age of 4 months~Doctors tried to pass it off as SIDS when in fact she died from LCHAD, a metabolic disorder. Do you know that a $20.00 newborn screening test would have saved her life? It's completely treatable with diet. At the time, California did not do EXPANDED newborn screening. Only certain screenings. PLEASE PLEASE PLEASE share this info. AND PLEASE DEMAND "EXPANDED" Newborn screening for your baby.
There are many metabolic disorders but the one that took our little Nora is where..."the body can't break down certain sugars & fats"...even the breastmilk was doing damage. THERE ARE NO WARNING SIGNS!..My mom was with Nora when she had to be rushed to the hospital. Your state may do the newborn screening and may not. I can't believe that there are parents that don't request it..IF WE WOULD HAVE KNOW ABOUT THIS..SHE WOULD BE ALIVE TODAY
Here is her story..contact me w/ any questions.
http://www.geocities.com/noras_mommy/Nora.html
2006-08-08 11:21:14 · 4 answers · asked by PhantomLover 5 in Pregnancy & Parenting ➔ Pregnancy
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2006-08-08 11:22:47 · update #1
I'm so sorry about this and my prayers will be with you and your family.I will be sure to tell everyone i know who has newborns,pregnant,or trying to get pregnant.Thanks for letting us know about this disorder and thank god they are still people who cares about others to let them know about these kind of things.God Bless You
2006-08-08 13:47:53 · answer #1 · answered by dixierose 2 · 1⤊ 0⤋
Honestly you might have saved some lives today,I wish there were more people in the world like you!I am sorry about Nora,I lost a son Rico at 12 weeks,his lungs were not mature enough,to small,I had great pre-natal care,it has been 22 years and I still think of my angel with a natural black mohawk!
2006-08-08 11:29:19 · answer #2 · answered by Cherokee 5 · 1⤊ 0⤋
My heart is so sad for you.God be with you and the family.You probably just saved a newborns life.My sons girlfriend is pregnant and I will sure to let them know.May you find peace and let God lead the way.Thank-you so much.
2006-08-08 12:40:30 · answer #3 · answered by Anonymous · 1⤊ 0⤋
im so sorry about this... my prayers will be with you and your family. thanks also for the information. ill make sure to tell my friends and my aunt who is pregnant.
2006-08-08 11:26:22 · answer #4 · answered by ♥Sher♥ 3 · 1⤊ 0⤋