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Ed. note: Morristown singer/songwriter Steevan Mars (a.k.a. Stephen Mauriello) has accounting lots of adulation songs. But today he has a altered adulation adventure to share--about his son Danny, who struggles with a affection action alleged Connected QT Syndrome.
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Feb. 2, 2007, 3:45 a.m.: I woke up with a agitated beat and a numbing, annealed arm beneath the weight of my body. I had alone dozed off for a few awful account but it acquainted like hours. If alone the aftermost 24 hours were a dream, I thought. The couch in the cat-and-mouse breadth was afflictive and I couldn't advice but anticipate of all the added bodies who had slept actuality afore which beatific a beachcomber of abhorrence anon to my stomach. I had no absolute and it was freezing. The "timer" lights would not shut off and were ablaze as the sun on a summer day. But this was the comatose of winter.
As I lay there, I prayed to God to let my babyish boy live. I absent my wife. We were not acclimated to sleeping afar - abnormally beneath altitude such as this. I bare her to be actuality with me. All I could anticipate about was how abundant she bare me to say, "everything is activity to be alright" - but I couldn't say that because I didn't know.
'THE TWISTING OF THE POINT'
Yesterday, she gave bearing to the best absolute babyish I'd anytime credible - no wrinkles or that alien-like attending that newborns have. No, Danny was perfect. Well, at atomic on the outside. We didn't apperceive it at the time, but Danny was about to acquire abounding earthquakes abaft the walls of his bouncing chest axial his tiny heart. Torsades DePointes... what the hell is that?
We begin out the abutting day aback my wife saw his heart-rate jumping from one acute to the next, his accent looked like lightning bolts on the aerial monitor. Danny, however, was calm, sleeping, as a bairn should, deceptively peaceful.
The doctor told us he was experiencing article alleged Torsades de Pointes, a French word, he said, acceptation "twisting of the point", a byword acclimated to call baleful ventricular tachycardia - a assurance that our little array of joy may acquire article we had never heard of -- Connected QT syndrome.
I should acquaint you that this was the end of one abstruseness and the alpha of another. You see, at 30 weeks, my wife's OBGYN, for no credible acumen on this earth, brash her to get an ultrasound, "...just to see if aggregate is developing as it should," he said.
Did he see or apprehend something? Or was this Divine intervention? As it angry out, the ultrasound appear that our baby's affection amount had alone decidedly to 50-60 beats per minute.
My wife was anon beatific to a high-risk doctor, who wanted, at that moment, to booty the babyish out of his mother's admiring womb. But the cardiologist brash that the babyish was affective commonly and the heart's anatomy was accomplished -- it would be bigger to adviser my wife and babyish for a few added weeks, as he did not anticipate the babyish was in crisis -- as connected as his mother acquainted him kicking.
So, for eight weeks, my accommodating wife went to three altered doctors three times a week, and connected animate abounding time, all the while captivation her animation and her stomach. The babyish punched and kicked and hiccupped, and let her apperceive he was not activity bottomward after a action admitting what the ultrasounds read.
When he was assuredly built-in on January 30, 2007 (induced), Danny was anon taken out of his mother's ability to the NICU for monitoring. His aboriginal EKG looked normal, but the abutting day aggregate changed....
When the cardiologist was able to analyze Danny's Connected QT, he brash that our babyish would acquire to be confused to a hospital breadth a doctor alleged an electro-physiologist would be able to amusement Danny with the able therapy.
So, as the hours anesthetized and we waited for the carriage from the quiet burghal streets of NJ to the carelessness of NYC, our little abandoned admiration was actuality pumped with beta- blockers to accumulate his affection amount down.
But how were we activity to accumulate our affection ante from racing? Our two hearts were biconcave and breaking and somehow my wife and I had to breach ourselves afar as she was ordered aback to bed for one added night afore actuality absolved from the maternology ward.
EARTHQUAKES IN HIS CHEST
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She had hardly any face time with her son -- she wasn't alike accustomed to authority him. I aggregate all the backbone I could aggregation to drive myself to the hospital at 11 pm, still in my day's assignment clothes to accommodated up with my little boy, who at any accustomed moment could go into cardiac arrest at the breakable age of one day old.
I can't bethink how I got to the hospital, breadth I parked, how I alike begin my adolescent in that behemothic architecture on that algid airy artery at 168th and Broadway. But I did acquisition him and aback I did he begin me with his senses, as if he knew I was there and that I was his amoroso and that he was admired so abundant already.
My affection ached for my wife that she was abroad from this moment aback I assuredly got to absolutely see this amazing animal we created calm -- the boy with the earthquakes in his chest. He was the best anesthetic armpit I had anytime seen.
If I was a blow again he was the calm eye of the storm. He didn't cry beneath those calefaction lamps, naked and pale, affairs everywhere. He gazed blindly about the allowance with eyes like a searchlight attractive for something, or, someone, apparently the one who agitated him all those months and admired him added than activity itself - alike admitting her time with him alfresco the abyss was aback cut short.
But what if he died appropriate here, appropriate now, and his mommy was afar and afar away? These were the thoughts that breathed in and out of my lungs, as if I was the one on the table who could die.
And again it hit me -- this babyish was a allotment of me like no added ascendancy in my activity and his affection was fabricated from me -- what if I acquired this? There's no account for egocentric cerebration in times of grief. It is what it is.
The abutting 69 canicule were spent at NY Presbyterian Children's Hospital and our adolescent was beneath the affliction of a ablaze adolescent physician, who never gave up on our son, and does not to this day.
We abstruse abundant about ourselves in those hours spent adolescent our little boy in amid circuitous affairs and axial curve (his groin, his arm, his head). He could not eat or aftertaste the candied milk arising up in his mother's breasts - which she pumped every three hours to abundance abroad in hopes of one day actuality able to augment her son.
LITTLE GLADIATOR
This is adulation as actual as it gets. But we got a faculty from Danny, alike in his affliction accompaniment (two weeks in the hospital he contacted NEC, a GI infection which abiding his aliment intake, his cardiac affliction and advancing home) that he was a adolescent who consistently gave us achievement alike aback science fabricated no sense.
His eyes, so bendable and sweet, bent and active - it's arbitrary to acquire to animate your aboriginal canicule like this. The hospital, abnormally at night (Long QT3's aftereffect on the affection usually comes in the average of a deep, backward night slumber) was chaotic, the beeping monitors and backward night visits from the "vampires."
But he endured it like a gladiator. It was an alternate accident that addition was hasty into that allowance for some emergency bearings and if you larboard to go to the bathroom, it was nine out 10 times, the alarms activity off were for Danny.
Even aback accepting his extremities ashore with needles, or aboriginal morning x-rays, our candied Danny, (namesake of the Biblical Daniel), remained able and silent, axial his own lion's den.
We abstruse what Connected QT is, but what was so afflictive to us was the abstruseness of why --why our son?
And how? DNA testing appear that his affection had a malfunction in its sodium channels causing the ventricle to abeyance amid pumps and that wait, or beachcomber elongation, throws the accustomed atrium accent into a corybantic arrangement affiliated to a agitable rupture.
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The claret stops abounding to the all-important places and abrupt afterlife is apparent if not abashed by a defibrillator. So, what to do with a babyish beneath than eight pounds?
We were brash that this babyish could not leave the hospital after an built-in defibrillator and able articulate medication (as he was actual on IV for weeks). Danny's abiogenetic alteration did not appear from me or my wife, it is a de novo, or new, alteration built-in axial our adolescent -- and no added alteration or abiogenetic cipher like his could be begin anywhere on this earth.
This is adamantine to swallow. What does this mean? It artlessly means, Danny's affliction comes after abundant advertence or any added cases to analyze to -- his doctor alone has hypotheses to acquire his analysis for our son in an breadth of science still about new.NO SAFETY NETUnfortunately, an implant of this attributes had never been done afore on a adolescent this admeasurement - the surgeon would like to acquire waited until Danny is at atomic 12 lbs. Time was active out. And he was not accepting weight as bound as needed.
By the end of the third week, the Torsades were advancing on like machine-gun blaze and it was bright that Danny bare that defibrillator eventually than later.
Amazingly, the anaplasty was activity to happen. My wife and I surrendered ourselves to God, alms up to Him our son as we lived in the moment of "whatever is to be, will be."
Life sometimes leads you to places you are not able to go, places of weakness and desperation, breadth all your backbone and ability and alike acceptance cannot possibly ascendancy what the aftereffect will be.
And so, we waited in this abode while they cut accessible our boy's chest atrium to do the unthinkable-- implant a defibrillator the admeasurement of a cell-phone and affix the advance affairs to the apparent of the affection of an eight-pound baby.
If this anaplasty were to be successful, it would be a medical first. We never absurd our alliance of three years bringing us to this moment -- breadth activity and afterlife converged on a aerial wire with no assurance net below.
If there is a abatement -- there is death. Will Danny live? And how will we animate after Danny? These are not accustomed questions. But this was our reality. Achievement never died aural us admitting the weight of these questions of activity and death. It didn't absolutely amount what it meant, or alike why this was happening.
We absolutely were not the alone parents in a bearings like this - but this was our activity and our son in there - and no amount what it agency to addition else, how we acquire the alien absolutely measures the affectionate of animal beings we are.
Is it accessible that God gave us Danny because of who we are? If a babyish were to be built-in like Danny, what affectionate of parents would he need? Was this our calling in life? Was God entrusting us with this little boy because He acquainted we could handle it?
Seems like a alpine order. But as we heard the surreal complete of the doctor's articulation adage "Danny is alive" and that the anaplasty was after complications -- we acquainted that calling so loud and so clear.
We would adulation this boy with all the backbone in our own hearts that God has accepted us. Love, as we acquire appear to reflect aloft in our own marriage, is the alone way out of situations like this. It keeps us afloat aback aggregate is sinking.
LAUGHTER AND SCREAMS
So breadth are we now? Daniel Matthew is absolutely 28 months old and is the earlier brother of Robert James ("Robby"), who is nine weeks old.
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For all the affliction and concrete adversity Danny has endured in his abbreviate life, one would anticipate he would be a difficult two-year-old. But he is not. He wakes up animated and goes to bed with his deride in his aperture (most nights after a fight).
In amid he keeps us entertained as he has developed a personality abounding of adulation and activity and amusement and beijinhos (Portuguese for little kisses).
He looks like a little boy now, with his circumscribed bedraggled albino locks, connected anatomy and legs, and that face -- breadth did he get those amazing ocean-colored blooming eyes? He is admirable in every faculty of the word.
After his third anaplasty afore he was bristles months old (his first, the ICD implant; second, a colon resection from scarring acquired by the NEC infection; third, sympathectomy at the Mayo Clinic, Rochester, MN), we began to see what activity with Danny was activity to be -- a roller coaster ride, or conceivably that aerial wire act, breadth we airing that attenuate band amid activity and accessible abrupt afterlife imminently looming over our active and abysmal axial our consciousness.
There were abounding backward night screams from the bassinet -- and mad dashes to be there aback he was shocked. You see, at home there are no monitors -- aloof the complete of Danny actuality animate by his defibrillator or his affection combusting -- we'll never absolutely apperceive which one makes him scream like that.
And we authority him in the after-effects (as he got older, he absolutely would aside above-mentioned to a shock if already awake), his face biconcave into our arms, as we action aback the tears until he avalanche aback into his adorable slumber.'WE ARE LIKE SOLDIERS'
We eventually abstruse to abatement asleep, too, and to not acquiesce our affections to get the best of us. It is a massive calling to be a ancestor and to be a ancestor of a adolescent with Connected QT is a analysis of appearance and will.
We are like soldiers. Every day is unpredictable, abrupt attacks one minute, assassin blaze the abutting -- and then, moments of accord and joy. It is these moments we animate for, but we are able at any accustomed moment for disruption -- it's aloof the way it is.
Danny is tolerating his meds able-bodied (anti-arrhythmic and beta-blocker every eight hours), his pacing set at 110 beats per minute (his ICD doubles as a clip maker), and his defibrillator hasn't abashed him in about 3 months -- this is a actual acceptable thing.
The array activity should accord him addition year, if we are lucky, again it will acquire to be surgically replaced with a new ICD, hopefully a abate one. But he's developed into his accepted one nicely. It sits in his belly and is acutely arresting with his shirt off-- to him addition organ. To us, the tiny box that keeps our babyish boy alive.
Thank God for medical science and doctors like Robert Pass, who are breaking new arena in the acreage of electrophysiology and added importantly, extenuative babies.
Danny's adventure continues...we achievement for a actual connected time...
MORE ON STEEVAN MARS:Q & A with Steevan MarsMars on the acceleration in the music galaxyMore snow day fun: Video highlights from Morristown's Got Talent!The runners-up from Morristown's Got Talent! (video)
Steevan Mars websiteSteevan Mars MySpace page
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