Tuesday, July 24, 2012

Comfort care for newborns is not theorized about. Asked where she learned it, she smiles and says, “From my mother.” Dr. Elvira Parravicini

     Everyone is in the operating

room: doctors, interns, and nurses.

      The birth of Siamese
twins is rare, and so there
are also students ready to
take pictures. Then, there is the father,
a 15-year-old African-American wearing
a bandana on his head and rapper
jeans. His girlfriend is on the bed,
a 15-year-old like him, ready for the
C-section. They never had any doubts:
“They’re our daughters.” What was
there to understand or decide? They
knew from the beginning that the
daughters would live only a few minutes,
because they are attached at the
chest, with one heart, and it is impossible
to save them. The delivery begins
in the midst of a flurry of white
scrubs and recriminations. Most
think this should not have been done,
“because it will scar them for the rest
of their lives; they should have aborted,
and been done with it. It’s absurd,”
they insist, grumbling to the end–until
Keela and Kayla are born, embracing
each other, each weighing a
pound and a half. Their
boy-father asks, “Can I
hold them?” and begins
to cuddle them. They
are barely breathing. “I’m
here, don’t be afraid.
Daddy is here...” Silence
fills the room. Nobody
moves. Tears flow down
a few faces. “Such a powerful
beauty was manifesting
itself that everyone in that
room was changed. We contemplated
the beauty of the Mystery,” says
Elvira. This expresses everything
needed to explain her neonatal hospice,
a place that cherishes that beauty,
bends over it and cares for it, for as
long as possible, for all the time of the
life of a child, be it three minutes or
three days; a few hours or few months.
Dr. Elvira Parravicini, a neonatologist
at Columbia University in New
York, will speak at the upcoming Rimini
Meeting about the program
she founded to assist newborns affected
by fatal syndromes: babies
born already terminal. It is the first of
its kind in the world. Everywhere else,
if these children are allowed
to be born, they
are born to die. Here, instead,
they are born to
live. “Existence has a beginning
and an end. We
do not establish the
times, but in the meantime
we can do everything
possible to make
their lives beautiful.”

is not a ward, exactly. It is a special delivery
room, prepared when and as it
is needed. Recently, the hospital also financed
preparation of a little room
where parents can spend the time
given with their child. It is a fascinating
time “for all of us, also for the nurses,
because it requires everyone to
engage humanly,” says Elvira. “Techniques
are not enough.” Comfort care
for newborns does not have a model;
it is not theorized about and she did not
study it in books. Asked where she
learned it, she smiles and says, “From
my mother.” She says understanding
the need of the other depends on
how you look at him or her. “I have
learned a gaze. I saw it in my mother
and in the companionship of the
Movement.” There is no protocol,
just what she calls “cornerstones.” It
calls one to “respond to the primary
needs of a child”–the need to be welcome,
which means being with those
who love him/her, the need to not suffer
hunger or thirst, the need to be
warm. “These things give the baby great
relief.” And the way she says this
shows the fullness of her gaze. In the
name of these cornerstones, all the rules
of intensive care go out the window.
“You do things that shouldn’t be done,
even ‘crazy’ things, but you do them because
the care is highly personalized.
It depends entirely on the baby. We depend
on him to let us know.” They
even went so far as to perform a smallW

operation on a newborn with amniotic
band syndrome, whose head and
face were distorted. “You saw only a little
hole, and that was her mouth,
with which she needed to eat and
breathe. We put in a little gastric tube
to help her. In this way, she lived her
four months, but breathing well.” All
the decisions are made with the parents.
“You decide the care step by
step, make a proposal, compare ideas.
They help you a great deal, because
those who opt for comfort care are focused
on the baby, not on their own
pain. They want to serve the baby’s life.”
One night, Elvira was called for an
emergency. A mother she was following,
whose child had Trisomy 18,
a life-limiting congenital syndrome,
delivered early. She was there, in the
commotion of the emergency room,
with everyone working and without
a room. “It took a tremendous effort
to enable her to stay with the child in
a suitable place.” A battle, as if to say:
stop, everyone. He is here. Perhaps
comfort care is primarily this stopping,
this respect for the fact that
someone new is there. “They»
would have left them
there until the little one died.
Instead, he lived twelve hours, and
spent them with his parents and
young siblings. It was beautiful to see
how they celebrated him...”
This opportunity, which previously
was extemporaneous, has for four
years had the name of neonatal hospice,
but it was never anything
planned. “I didn’t do anything. Every
step of mine was prepared by an
Other,” Elvira recounts. She arrived in
New York at the suggestion of Fr. Giussani:
“Why don’t you go to America?”
It was 1986, when she was 30 years old,
and she did not know a word of English.
She began with a year’s residency,
then a few times back and forth,
and finally returned for good in 1994.
In line for the interview at New York
University, along with scores of candidates
in dark suits, she was wearing
a flowery dress. “There I understood
that I had no idea what I was doing.”
But she followed. Seven years later, she
became assistant professor at Columbia
University, where she had
started out at point zero, as an intern.
In the midst of all the changes, one
thing always remained the same: “The
desire to care for sick or
malformed newborns. I
become very fond of
them.” Why? “Because
they are needy. And then
because they are given to
me.” In 2001, she started
work with the team of
prenatal diagnosticians
at Columbia, where all
the specialists, from the
geneticist to the surgeon, examine
the at-risk pregnancies. “The default
proposal was abortion, without discussion.
They did not even speak
with the mothers. And every time, it
was an incredible suffering, but I didn’t
want to be indignant and battle
them, because it would have been useless.
In the end, I was so saddened that
I left.” After three years of absence, one
morning the head of Obstetrics, who
was pro-abortion, met her on the
ward. “Elvira, why don’t you come to
the meetings any more? You learn so
many things there. Come on, return!”
Just this, a quick exchange in the corridor.
“I didn’t hesitate a second. I said,
‘You want me there, Lord. I’ll return.
I’ll suffer, but at least I’ll
suffer with those children
who will not even be
allowed to be born.”
At the first meeting she
attended, among the cases
being examined were
those of two women expecting
children with Trisomy
18 and, strikingly,
“they didn’t want to
abort. So then I said, ‘Give me these
mothers; I’ll follow them. When the
children are born, we’ll provide them
with comfort care.’ But I didn’t even
know well what I was saying.” She
only knew she wanted “the life of
those two children to be wonderful,
and for those women to have a chance
to be mothers to the very end.” This
was in 2006. From that day, obstetricians
and secretaries began sending
her all the mothers who decided to
keep their babies, those in doubt, and
those who could not abort because the
diagnosis came after the 23rd week.
Everything began this way. There
was never anyone who said, ‘Now let’s
set up a neonatal hospice.’ The hospice
was born between the lines and
operates this way.


Elvira’s team also evolved along the way.
“Today there are almost ten of us, including
nurses from Obstetrics and
Neonatology, a gynecologist and a social
worker. Almost all of these sought
me out first, asking to work with us.”
The strongest reason for this committed
interest, and least articulated,
is for those moments in which beauty
happens: “You can’t explain beauty,
but your heart recognizes it, intercepts
it.” The parents are the first
to do so. “I continue to do what I do
because I can’t remember one case–
in the last four years we have followed
56 cases–in which the mother and father
were not grateful, glad in theorgan
Stanley Children’sospital of Columbia
University; Right, Elviraith two interns, and the
midst of their tears. They tell me, ‘You
helped us to be parents.’ And these
people are very diverse; this is rarely
a ‘moral’ or ‘religious’ choice. Instead,
it is the response to a desire written in
the heart.”
The uniqueness of the Columbia
hospice is its “medical” idea of comfort
care. In other hospitals, the common
mentality is: “I know that the
baby will die, so I’ll stop intensive care.”
But this can mean everything, even
stopping nutrition, to the point of becoming
a shortcut to euthanasia. The
borderline is dizzying. Similarly, one
can err and slide into the opposite, that
of unnecessarily prolonging artificial
life support, keeping the baby alive at
all costs because you can’t stand seeing
him die. But this way, he dies in
pieces. The road to take is discovered
only through experience. “The only
road is reality. Reality speaks. The baby
gives us all the signs we need, because
he is given, to the parents and to me,
to us, who cannot define his destiny.
Only the One who gave it knows
where it goes. We are asked to observe
and follow reality.”
There have been newborns in comfort
care who did not die, in contrast
to the prognosis. Alejandra was born
premature with a grave infection
that destroyed her intestines. The surgeons
decided that the only thing to
do was wait for her to expire. “We
started comfort care, we kept her two
months, with the minimum
of nutrition and
morphine every two
hours!! In everything,
you have to ask yourself
if you are exceeding the
limit. With Alejandra,
we decided to keep her in
life support with minimal
settings, because she
was a premature infant
and ‘healthy.’ Premature babies may
need this kind of support until they
can breathe on their own. The fact is
that at a certain point, she began
breathing on her own, and improving.”
Today Alejandra is 4 years old,
and her mother Sandra says that
she has been cared for “every day as
if it were her last.” It is striking to hear
Elvira say, point blank, “I have never
erred.” Not because she always got
the treatment right; rather, she does
not even believe that there is a “right
choice” or a “wrong one.” “It is an entirely
different thing to follow reality.
It is a dialogue with the Mystery
who makes it. But all our life is like
this: it develops either in a way that
you lead, and you live in total anguish,
or one in which you respond. Since
Christ was made flesh, reality reveals
Him, and you don’t have to invent
anything.” You put all your energy
into that dialogue, and you risk following,
because the evidence with
which reality speaks to you is not
peaceful. “For me, it’s always very dramatic.
It engages my freedom, mine
and that of the parent. However, it
asks only one thing of me: purity in
looking at the situation.”

THE RISK AND THE HINT. Thus, life and
work are a prayer in action, continually
praying for a hint. Elvira is a
member of the Memores Domini.
“My work is the greatest verification
of my vocation,” she says. “Vocation
is following the fact that Jesus is
everything of my life. Here, I see His
victory over ugliness, over evil, and
over death.” She is frank
in speaking of the Mystery:
“It is not beautiful
not to live. And those
children do not live, or
live very little. I don’t
know why, but I see the
Cross of Jesus and the
Resurrection.” She touches
them, while they are
present, as when she baptized
the little Siamese twins before
they died. They were there on the bed,
embraced with each other and identical.
She began to make the sign of
the cross on the first: “I baptize you
Keela...”. The boy-father grasped her
arm: “No! She’s Kayla...”. The gaze of
that father on his daughters was that
of God. “Only He loves us this way.
One by one.”

The only road is
reality. Reality
speaks. The baby
gives us all the
signs we need.
We are asked to
follow reality.

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