Nicholas F.


My son Nicholas was born at 31 weeks gestational due to IUGR. He spent 85 long days in the NICU over at Strong Memorial Hospital in Rochester, NY. When Nicholas was born luckily he did not require any oxygen or serious medical attention, it was a few weeks later in the NICU when the newborn scan had come back with some “odd results.” With a second repeat to the newborn scan it was diagnosed my son had Propionic Acidemia. Although nothing else indicated that he had PA the Genetics doctor insisted we treat him accordingly to the results. As he was maturing in the NICU he had to go under surgery because he developed
Necrotizing enterocolitis (NEC) the surgery and the PA worked against each other and caused my son to be in critical condition for 3 weeks post surgery. Once he finally healed up things began to look a lot better, he had such an appetite for his bottle, and “shocked” the genetics team with how much he wanted to eat. Post NICU  we had our son home and things felt normal. Nicholas got his colostomy bag off and that bettered his ammonia levels, which resulted in him no longer having to take Carbaglu (ammonia decreasing medicine.) At the 9 month check up, the Genetics team thought he was doing great with eating all his fruits and vegetables and decided to add on “pastas and grains.” Nicholas was given a goal of eating up to 6-7grams of protein a day.

He is now almost 11 months old and loves food! He has quite the appetite and will eat anything he may come across, which we keep a careful eye on. Developmentally doctors have no concerns as of now and is doing well. As his one year birthday approaches we have talked with his genetics dietician and will continue to increase his protein intake as his body allows. It’s been a roller coaster this first year but we are happy to be in a “safe” place now with Nicholas and his happy/silly personality!