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Stephen's Story


On May 29th, 2001, Stephen Monaco, a bright-eyed three and a half year old, came down with a typical virus.  His stomach was upset, and he felt stuffy & achy.  He was up frequently that night.  His Mom was always there giving him hugs and comfort.  Finally, about 2:00 a.m. he drifted off into sleep.  When his Mom went to his room the next morning to wake him, he did not respond to her voice or touch.  She immediately called the pediatrician who recommended a trip to the hospital.  Something similar had happened months earlier.  The problem was diagnosed as dehydration.  A night of IV fluids was completely remedial in that case.  So his parents, Tom & Jana, weren't too worried.  The paramedic team that transported Stephen to the hospital had already started an IV.

When they arrived at their local hospital, the lab technician did a blood test.  Stephen's glucose and oxygen levels caused great concern.  Consequently, the hospital staff advised his parents that he should be transferred to a state-of-the-art children's hospital in Fairfax, Virginia, where they have a wonderful pediatric ICU.  At this point Stephen's Mom and Dad began to panic.

At that facility more blood tests were performed.  Tom & Jana were still optimistic.  As with all parents, there is panic and worry, but also a bottom line notion that everything will be OK -- eventually.  What came to pass the following day shocked Stephen's parents.

As hospital staffers were preparing him for an MRI, Stephen had a seizure.  The images subsequently produced indicated swelling on the brain stem.  Stephen had an even more severe seizure after returning from the MRI.  He came very close to death.  The doctors were able to stabilize him through intubation.  He was diagnosed as having Isovaleric Acidemia.  Stephen lacks the enzyme to break down the amino acid leucine.  Elevated levels become toxic (highly acidic) to him if he gets dehydrated.  Vomiting caused by the virus he had contracted resulted in precisely this condition.  The acid running through Stephen's blood triggered the seizures and caused the damage.

On June 4th, the Monacos received devastating news.  Another MRI revealed severe damage to Stephen's cortex and brain stem.   The doctors said he had no hope at all of survival.  Only life support apparatus would keep his little heart beating and his lungs breathing.  His parents were numb.  In 6 days their warm, sweet little boy, who's tiny hand they held as he learned to walk, whose soft embrace had thrilled them so … was leaving them.  No parent could abide such a thought!  From heart and soul, they prayed.  Friends and strangers prayed with them.  And just when things seemed darkest, there came a small glimmer of hope.

A pediatric resident was having a hard time believing that Stephen's life was truly over.  Tom Monaco said of him, “He is truly a man placed in our lives through God.”  The doctor pointed out that there are very few cases of Isovaleric Acidemia (70 since 1989); and less than half of those pertain to a child over one year of age.  Stephen’s case was relatively unprecedented and, therefore, unpredictable.  “He truly picked us up after the dust had settled; brushed us off, and got us focused on being advocates for our child,” Tom said.  This set the stage for yet another pivotal event.

The Monacos had sought second opinions from pediatric neurologists and respected academic experts.  None of these would affirm their hope for Stephen's survival.  After 2 weeks, Stephen's Mom & Dad were faced with the decision of when to shut down life support.  Knowing intimately the heart of Abraham when he relented to give his son Isaac to God, Tom and Jana said, “OK God, we'll let him go if that's what you want.”   It was at this point that God brought another doctor into their lives.  This doctor had been out of the country, and had not seen Stephen's case.  This doctor is a highly respected physiatrist.  When he examined Stephen and reviewed his case, he advised that Stephen be continued on life support and that he be provided with rehabilitation and stimulation.  From that day forward, Stephen began to improve. Jana said, “It was as if God had sent an angel to us.”

Stephen has been through months of treatments including Hyperbaric Oxygen Therapy.  He is progressing beautifully.  He is now in a state known as a “light coma.”  (The last picture above is a recent one.)  He can hear very well and has a good sense of touch.  He seems to recognize his Mom and Dad.  But he is not able to take anything by mouth yet, nor does he have the ability to walk, talk, or sit up without support.  Yet he has advanced to the stage of being able to raise his head up now.  His therapy and medicines are expensive.  But Stephen will be given the chance to develop to his maximum potential....just like any other young boy.