GET SUGAR WATER OUT OF THE NICU!!!
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My son was severely growth restricted in the womb and was born seven weeks premature, weighing only 2 lb. 11 oz. He spent two months in the NICU. Other than being anemic, he seemed healthy. Yet, as his stay in the NICU progressed, signs of liver disease emerged. Doctors wanted to put him under for "exploratory surgery". We refused. Thankfully, we whisked him to one of only two hepatologists in Florida. There is no doubt my son would have died if we had not taken him there. He was put on a "cocktail" to heal his liver. Our son improved and was fine for months (other than slow growth). Then, when he started to eat solids, his liver enlarged and symptoms returned. We embarked on a journey that took us to multiple specialists in and out of Florida. While we waited for genetics results, we put him on a fructose-free diet and the change was instantaneous. He has been thriving on a fructose-free diet ever since (this means no fruits, vegetables, table sugar or any other form of sweetener).
I was plagued by the question: "How did he develop signs of liver failure as a newborn in the NICU?" Then, I remembered the "Sweet Ease"! In the NICU, nurses give babies sugar water every time they have a blood draw or procedure in order to calm them! My son was given sucrose to calm him for blood draws. As his labs worsened, more labs were drawn, and more sucrose was given, creating a potentially-fatal cycle! The irony of him repeatedly being given the very thing that was causing him to be ill in the first place has left me determined to get sugar water out of the NICU! Introducing sucrose to any newborn's gut is at best undesirable. But, giving sucrose/fructose/sorbitol to a child who may have an underlying carbohydrate metabolism disorder could be fatal. Researchers have been pushing manufacturer's of infant formulas to get sucrose out of baby formula (https://medicalxpress.com/news/2018-05-sugars-infant-formulas-pose-babies.html but I need your help to tell the AHA that it is vital to get sucrose/fructose/sorbitol out of NICUs and PICUs everywhere. We need to sing lullabies to babies who are having painful procedures, not feed them sugar. The consequences of the latter practice could have been devastating to our family had we not gotten him out in time.
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