About Philip

Philip Bonvino was born February 8th, 1988, at Stony Brook Hospital.  He was born with low tone, floppy, a cat cry, and the inability to swallow.  He had clubbed feet and contractures of his fingers.  His breathing was labored and he was intubated (on a respirator) to help him breathe.  He had a muscle biopsy resulting in a diagnosis of Nemaline Myopathy, a rare neuromuscular disease with a poor prognosis. No one really knew much about this disease 16 years ago.  He was a mystery, an adorable one.  He was given 6 days to live.

My pregnancy was uneventful, not a lot of movement.  I had polyhydromnios (excessive water) towards the end.  Philip was not descending and I was sectioned.  At 11:10 AM, my whole life changed.  Philip was a good size, 7lbs., 10 oz.; he was the cutest thing I ever saw.  I saw him briefly.  Then he was whisked away, and at that moment I remember a sinking feeling.  I went from elation to total fear.  I didn't see him for quite sometime.  I kept asking, "where's my baby"?  I was dreaming; not prepared for what came next.  There were tubes all over him.  I was desperate to hold my baby, but fearful of harming anything that had been in place.  He was put in my arms and since then we've been inseparable.

He was sent home in April, after surgery to insert a gastrostomy tube that introduced formula directly into his stomach and an apnea monitor to keep an eye on his heart rate.  We were given a suction machine to remove saliva, since he couldn't swallow or cough.  I remember sleeping with my hand on his chest.

Philip was readmitted to the hospital in June of 1988 for failure to thrive. A diagnosis of a hiatal hernia and an unwrapped fundoplication forced him to undergo another surgery; a revision of his G-tube and a Nissan fundoplication (a procedure to prevent reflux and aspiration).  During this long hospital stay, Philip had episodes of respiratory distress.   Another surgery was necessary to help him breathe.  A tracheostomy was performed and he was sent home with a respirator (a breathing machine).  He was on the vent 12 hours and off for 12 hours.  He became respirator dependent at the age of one.  I was never able to wean him off to breathe on his own again.  Philip at that point showed me a will and a spirit I had never seen before.  He wanted to be here.

Philip was sent home with 24 hour nursing and a mini ICU was disguised as his room.  Somehow, I can't remember when, it all became very normal.  This was my motherhood, my parenting. Everything was in place.  He had  OT, PT and an early education program at home.

In 1991, Philip had a grand mal seizure.  Epilepsy and Nemaline Myopathy do not usually go hand in hand.  He was hospitalized for 19 days and was sent home with anti seizure medication(s).  We have had to adjust them periodically.

Back surgery to correct scoliosis was performed in 1994, at Boston Childrens Hospital.  His physicians in New York thought the surgery, although necessary, was much too risky a procedure for someone like Philip.  The eventuality would be his spine crushing his left lung.  His smile was too big and his eyes too bright for that, so off to Boston we went and the surgery would be done. A surgeon, by the name of John Hall, saw this as something he was confident he could do.  It was the longest 10 hours of my life!  An RN, who had been taking care of Philip since birth, had gone into surgery with him.  While in the OR, he had an anaphylactic (allergic) reaction to latex. He came through it all and amazed everyone once again.  I had to scrutinize our environment and remove and replace anything that was made of rubber, including all of the equipment used for his care.

Since then, other than any routine doctor visits at Columbia Presbyterian Hospital or home visits from his local pediatrician, Philip has been home with his family.  Twenty-four hour nursing care continues to be necessary to suction his trach frequently,  monitor any seizure activity, and monitor and provide nutritional support (paying close attention to electrolyte balance, especially potassium, due to hypokalemia).  He is dependent for all of his activities of daily living.  He has confidence that someone will always be there in case he "pops off" the respirator.  Philip can only tolerate being off the ventilator for a matter of seconds, any longer than that, he will die.

Philip is home schooled.  He cannot talk and uses a device called a Dynavox, which is an augmentative communication device.  It row scans and has an auditory cue.  He uses a head switch to activate it.  Philip not only uses the Dynavox for his education, but also to socialize and express his needs. He gets his needs across with headshakes and smiles as well.

Philip does not have much movement, but the biggest, brightest smile, and deep brown eyes that look into your soul.  Just like any other child, he goes along with me on errands, enjoys movies, is a Yankee fan and has seen many Broadway shows.   He enjoys fishing trips and ferry rides.  He loves life and continues to thrive.  Quality of life would not be afforded him, and us as a family, without the help and care of the registered nurses who he has come to know and love.  These skilled professionals have always been an integral part of his life.  Without nursing care I would be unable to care for him alone.

He is an incredible child, not because of his multiple needs, or because he is in a wheel chair, but because he has an extraordinary love of life that has shown through all of these pains and heartaches.  Philip is truly one of the bravest people I will ever know.