Charlotte Elizabeth Calla Gentile
For Charlotte

Born to us on earth April 13
and born into heaven June 14:

Thank you Charlotte
for your two short months of life
worth more to God
than  most people's lifetime

Thank you Charlotte
for teaching us how to suffer
without complaining

Thank you Charlotte
for showing us how to love
our Creator God
with your whole mind, your whole heart
and with all of your tenacious strength

Every minute that you lived
on your return trip to Heaven
was a milestone of grace
for everyone near you

Little Charlotte - perfect innocent
and little Love-victim of God
whose life was a total sacrifice
clothed with the Sacrament of Jesus

Jesus, Jesus, Jesus
You healed sons and daughters
and raised them from the dead
I so much longed to hear Your
I Want It!
And Charlotte would still be with us

O Mother of Mercy
Your Son Jesus refuses you nothing
But You could not ask
or Charlotte would still be with us

O Perfect Humble and Obedient Son:
"Your Will be done O Father not Mine"

O Perfect Humble and Obedient
Mother of God and Handmaid of the Lord:
"Let it be done to Me according to your word"

O perfectly obedient and humble
Mother and Son
You do the Father's Will!

It is not for us to know
or question Your Will O God
Our Eternal Father

Michael and Sabina
Your precious Charlotte is in Heaven
A Saint!
She will never again be touched
by the offences and evil of this world
She will not feel pain, hunger, discomfort
Her agony and torture is over
And at the Resurrection
She will rise in a shining new
and perfect body
We no longer have to pray for her
She will pray for us

Let us pray:

O Holy Spirit
Sanctifier and Consoler
Heal the wounds
Of these young parents
Michael and Sabina

O Holy Family
Mother Mary, St. Joseph
and Jesus - Lover of all humans
continue to protect and love them

O Eternal Father -hallowed be They Name
We love you and abide by Your Will
because You are the Perfect Father
Who knows what we need Perfectly

Our Father - Thy Will be done
- here - now -
On earth as it is in Heaven. Amen

Love Grandma
In Loving Tribute
“So it was you all along. Everyone I ever loved, it was you. Everything
decent or fine that ever happened to me, everything that ever made me
reach out and try to be better, it was you all along.”
~~ C.S. Lewis


            Beautiful Charlotte
By Michael Gentile with wife, Sabina Calla

On Thursday, April 13th, my wife,
Sabina, went into labor. We arrived
at the hospital around 12:30pm and
our beautiful baby girl, Charlotte
Elizabeth, was born the same day at 6
pounds, 6 ounces at exactly 9:32pm.
The labour went extremely well and
we enjoyed our beautiful baby for
two days while at Womenʹs College
Hospital (Toronto, Ontario, Canada).
There was nothing to suggest there
was anything wrong with Charlotte
from the outset; she cried whenever
we changed her diaper, and she slept
and awoke in the same erratic pattern
as any other newborn.

Saturday morning during a routine
changing I noticed that Charlotte was
quite listless and not offering her
usual voice of displeasure. Her
breathing had become quite labored
as well. The nurses at Womanʹs College
were usually quick to respond to
my endless Iʹve-never-done-thisbefore
type of questions, but I was
alarmed when they showed some
concern when I brought Charlotte in
for a quick assessment. “Itʹs probably
nothing” they responded, but I could
see it was indeed something with
which they were not entirely familiar.
“Just in case, Iʹll call the pediatrician,”
said the perturbed nurse. Sabina
had flu-like symptoms so was
not permitted to come. She was given
Charlotte’s birth hat and photo while
she remained at Women’s College
Hospital.

The pediatrician, Dr. Zino, ordered
an ammonia level test. It revealed a
number of 642 when 50 is a normal
level for newborns. Dr. Zino who
had been in contact with Toronto
Hospital for Sick Children (Sick
Kids), was informed that an immediate
transfer was to be put in order,
and moments later I was on an
ambulance with Charlotte thereto.

The first examination at Sick Kids
did not yield positive results;
Charlotteʹs eyes were not reacting
to light, and although she had been
given medication it was likely that
the ammonium level was still
climbing. I was informed that if the
level were not drastically reduced
there would be certain brain damage
and ultimately death.

Dialysis was planned to remove the
ammonium from her blood, but
doctors spent much of Saturday
trying to determine how exactly to
undertake the procedure because
Charlotteʹs veins were far too small.
They were only able to resolve this
predicament by accessing her jugular
vein. I was later told that she
was probably the youngest ever
recipient of dialysis at Sick Kids.

Doctors also gave Charlotte six
rounds of blood transfusions in the
process to reduce the concentration
of ammonium in her veins. I left the
hospital at 11:30pm to return to Sabina
at Womanʹs College, but just
prior I was permitted to see Charlotte
again. The ammonium level was over
1200 and she was suffering from obvious
brain seizures.

On Easter Sunday Sabina was finally
discharged and able to see Charlotte
at Sick Kids. We had been phoning
every two hours overnight and were
aware that she had tolerated the dialysis,
but her condition was still
worsening. We were informed that
Charlotteʹs ammonium had hit 2450
overnight and the endless machinery
and wires were struggling to keep
her alive. The kidney doctor then
communicated that the rate of dialysis
had to be increased and her life
imperiled in the process, or we
would lose her to the ammonium.
She also advised me to organize
whatever final services I felt were
required.

Charlotteʹs progress had not changed
throughout Sunday, but she was
showing a strong willingness to fight
her disorder. The next morning we
took a walk up to Womanʹs College
to meet with Sabinaʹs obstetrician.
After our discussion, Sabina and I
finally started to accept that we were
going to lose our daughter.


But when we returned to Sick Kids,
the usually morose doctors were
surprisingly
upbeat: the ammonium
levels were dropping rapidly and
Charlotte had emerged from her
coma. We met with several teams in
succession and doctor after doctor
voiced their surprise, since an ammonium
level such as Charlotteʹs
would not usually result in such a
favorable reemergence. “Sheʹs defying
us,” one of the doctors said.
Another apologized for his very
pessimistic
outlook, having told us the
night before that weʹd have to “make
a choice” about keeping her on life
support.

The optimism halted abruptly when
the MRI at the end of the week
showed considerable brain damage.
We were warned that Charlotte
might not ever reason, walk, speak,
swallow, sit up, recognize us, or
hear. Several medical teams added
that we would face “continuous
challenges”
with her development that
are more severe than other survivors
of this illness.

The most important anomaly was
Charlotteʹs behavior, which was actually
quite positive, and there was
acknowledgment that the MRI does
not matter as much as her visible
behavior. At one point I asked the
medical team for the best case scenario,
considering that we were well
versed in all things catastrophic:
“normal with a learning disability”
was the response.

Over the weeks that followed, Charlotte
made a remarkable recovery.
An occupational therapist (OT)
concluded
an assessment of Charlotte,
evaluating her eye movements, motor
skills, social responses and crying.
The O.T. stated that if she had
not known her medical background,
she would not infer anything to be
wrong at all! How unbelievable, her
brain was seemingly rewiring itself!

The only problem she was still having
was management of her ammonium
levels. The metabolic and dietary
teams were trying to balance
Charlotteʹs intake of protein, which
she needed to grow and function,
with her medication that prevented
that protein from harming her. She
was given high doses of medication
for a prolonged period; despite best
efforts her levels rose and fell in
dramatic fashion. At one point they
became so erratic the metabolics
team ordered a liver biopsy to identify
exactly which enzyme in the
urea cycle Charlotte was missing.
With this knowledge they were hoping
to regulate her treatment with
greater effectiveness.

Charlotte suffered cardiac arrest at
5:00am on June 14th. True to her
beautiful, giving and feisty nature,
she held on long enough for us to be
with her. Shortly after we arrived,
she passed away in my wife’s arms.
As we had participated in her birth
with great love and pride, so we
would support her through her
death.

The day before her death, we celebrated
her two-month birthday. She
smiled many times and we had held
her and played with her for many
hours. Charlotte showed us and
taught us about joy in the smallest
things: she loved her crib mobile
(which she never tired of following!),
listening to music and my
wife’s lullabies, and of course being
held and cuddled. Charlotte was
endlessly curious about everything
and everyone around her (lovingly
nicknamed, “Bright Eyes” by Dr.
Feigenbaum). Charlotte taught us
what is truly important in life. She
carried her pain and suffering for
two months in order for Sabina and I
to make it through and to allow us to
know the beauty of her unselfish
heart.

The results from the biopsy recently
disclosed that Charlotte had CPS1
deficiency with a 100% enzyme
block. The doctors informed us that
such a severe version of this illness
typically results in immediate death
for newborns, so itʹs a miracle that
she survived two months. Again, the
doctors expressed their amazement
with little Charlotte, her desire to
fight on though torturous daily medical
procedures, her inclination to
defy odds and medical science, and
her ability to smile through it all.
What a fighter!

Special thanks to the beautiful spirits
at Sick Kids and Women College
Hospitals who fought valiantly to
save Charlotte while providing us
with infinite compassion: all of her
nurses, and Drs. Alan Berzen,
Annette Feigenbaum, Chantal Morel,
Fathiya Al-Murshedi, Michaela Zino.

Editor’s Note: Michael and Sabina
recently established a memorial fund in
Charlotte’s name. A street is being
named for Charlotte in their city, and
Michael and Sabina plan to hold a memorial
walk there in the future. Sabina is
also working with Cindy Le Mons to
establish a Canadian chapter of NUCDF.