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Caroline's Story

By Jana Monaco

Caroline Elizabeth Monaco is our true testimony to life goes on and how education and awareness of metabolic disorders and Newborn Screening can impact the life of a child.

With the knowledge gained from her big brother Stephen and his metabolic disorder, Caroline was tested with an amniocentesis  which confirmed that like Stephen, she too was affected with Isovaleric Acidemia.  Although the news was devastating, we quickly went into a proactive mode and started to plan for her arrival with the metabolic specialists.  The metabolic team worked diligently together to prepare a protocol for her beginning at birth, which would protect her from going into a metabolic crisis.  She was induced a week early, with the NICU doctors standing by, to implement her medical plan.  After a long night of labor, Caroline entered the world on September 20, 2002.  Other than her disorder, she was the picture of health.  She was with us in the delivery room for only fifteen brief minutes, and was then taken to the NICU.  They began her IV fluids and first dose of Carnitine.  Within two hours she was transported to the Children’s National Medical Center in Washington DC so that the metabolic team could closely manage her care. 

Although it was difficult to part with her, we knew it was in her best interest.  She was started on formula immediately to give her calories and then progressed to her metabolic formula.  An NG tube was needed at times until she could handle the large volume that the metabolic team had prescribed.  This allowed her to gain instead of lose weight like most newborns do after delivery.  With the early intervention, Caroline was discharged from the NICU after only three days.  Her metabolic appointments were very frequent at first, but have gradually decreased over time.  She currently is seen by the team every four months for lab work and check ups.  Her diet originally consisted of breast milk, Similac and her metabolic formula, I-Valex 1.  Today, her low protein diet includes her specialized formula combination along with low protein foods.

Caroline has developed normally since her birth and has only had a few colds.  With her careful management, she has handled them without any problems or hospitalizations to date.  She is a small and petite toddler, but possesses a strong willed and charming personality.  Her high energy level helps her to keep up with her older brothers and her family pets.  Like other toddlers her age, Caroline enjoys the Wiggles, dancing to music and playing with anything in sight.  For all intense purposes, she is a normal, typical “All American” toddler, who just happens to have a metabolic disorder like Stephen was at that age.  The difference is, we know about hers and can help prevent her from experiencing the same tragedy that Stephen did.  Although Caroline will never have the pleasure of knowing the fun loving, happy and personable child that Stephen was before his crisis, she has the gift of innocence to appreciate Stephen’s strong spirit and presence in her life.  We are blessed with the joy of watching a loving relationship develop between Caroline and her Stevie.  Although she runs and plays with her big brothers, Nicholas and Alex, Stevie is who she talks to, claps his hands, and wipes his face.  It is an example of unconditional love like that of our Heavenly Father, where she will give to Stephen in many ways that he can’t give to her.  However, like many, she will learn and gain great things on a different level from Stephen.   Despite her disorder, Caroline is a real blessing to our family and that extra spice to life!

Copyright by Jana A. Monaco 2004.  Permission to forward, copy and post this article is granted so long as it is attributed to the author.

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