REBECCA: 100 Hours
Four Days, And About Three Hours After Surgery,
Rebecca suddenly died.
She was having trouble breathing Sunday morning. Doctors decided to intubate her to make it easier
for her to breathe. While she was being intubated she spontaneously went into respiratory arrest, and then into
cardiac arrest. Despite all efforts by the best children's heart team available today, she died within
a few minutes.
The photograph above of Rebecca and her mother, Donna, holding her
daughter's hand as her baby struggled for air, was taken less than twenty
minutes before Rebecca took her last breath. It was about 100 hours after
her long surgery started on Thursday morning, and it was nine
months since her birth.
Rebecca was a very, very sick child, and had been her entire short life. Before surgery, she
had no chance to live at all. This operation only served
to give her a slim chance. Her heart defect was really a
death sentence on her birthday. Now, by the time surgery was available, she was at the end of her heart's ability to support her body.
Complicating matters was the severity of her heart's defects, making it as close to
unrepairable as these doctors had ever seen.
When little Rebecca woke up on Thursday morning, the day of her surgery four days ago,
she must have been
hungry and wondering why no one would let her have any breakfast.
Thursday it was her turn to be the first operation; her mother,
Donna, could hold her, kiss her, love her, coo in her ear, try to make
her smile, but she could not let her eat or drink. Rebecca stayed in
Donna's arms constantly, embraced deeply - as if maybe for the
final time. Right up until the last possible moment. Right up
until that dreaded instant when Rebecca was whisked from her
mother and off, quickly, into a deep, deep sleep, limp and
motionless on the blue sheet of the elevated operating table.
On that day Rebecca faced a difficult and dangerous morning, to be certain the
most difficult day of her short nine months. She was born with
the pulmonary artery outside of the pericardium, and the vessel
was smaller than it should be and also was divided. To make
matters worse, the inferior vena cava (the vessel that carries
blood back up to the heart from the lower part of her body and
from the right upper side of her body) was closed. The surgery
would try to connect one part of the pulmonary artery from one
side to the aorta, and from the other side to connect the other
part of the pulmonary artery to a prosthetic connector
that then joins the aorta.
Without this repair, Rebecca would never get enough blood returned
to her heart, and then to the lungs, to get oxygenated blood around
to her entire body. As a result, Rebecca was a "blue baby." The blood
that filled her body was dark, not bright red, because it lacked oxygen.
At the moment of Rebecca's birth, Donna knew that something was
drastically wrong with her child. "I saw she was white and after
a little while turned the color black. Her lips were blue. We
knew right away that it was her heart," Donna said. Before birth, Rebecca survived on the oxygenated blood provided
by her mother via the umbilical cord. Then at birth, Rebecca's heart and lungs assumed this responsibility, but the birth defects
within her heart made it impossible. The surgical repair was mandatory if Rebecca was going to be able to live. Even for the most
talented and experienced heart surgeons, this was a very difficult case.
Rebecca clung tightly to her mother's shoulder as
they walked upstairs from her bed on pediatrics to
the seventh floor and the surgical suite. They paused
just inside the main door to let a nurse help her mother
put on a gown and protective booties and a hair cap. Little
Rebecca, still in her pajamas with little drawings on the
cloth, gazed around at the unusual surroundings, curious but
obviously scared. She kept hugging and clinging to her mother,
putting her face down into the shoulder of Donna's gown, then
sneaking a peek as they walked down the hall and into a small
holding room just outside the operating room.
Inside, several nurses surrounded this beautiful child to entertain her,
sooth her, calm her as much as possible, gaze upon her angelic face
while waiting for the first shot of sedation to arrive. Donna, now
filled with anxiety and fear, did her best to hide her overwhelming
emotions from her little girl. She kissed her, hugged her, rocked
her, and whispered into her ear. It was growing close to the moment
when she knew that her arms were about to be empty of her baby,
and it was very frightening.
Then the anesthesiologist arrived, talked for only a moment with
Donna, and checked over Rebecca, and then a shot was injected
into Rebecca's left thigh. She cried only for a brief moment,
probably not from any pain as much as surprise. Then back into
Donna's arms, and the anesthesiologist bounced and rocked Rebecca's
little feet in the palm of his hands until the little one was
unconscious, much less than a minute later. He nodded once to
the nurses; Rebecca was handed over to them, and quickly they
turned and carried her away to the waiting table. Donna leaned
heavily onto a nurse, who held Donna and gently turned her away
from the scene, walking her slowly back down the long dark hallway
to the front door and the empty hall outside. It was about to be a very
long morning for both mother and child, but Rebecca, already
deeply sedated, would not be aware of the day passing by. Today,
and maybe the next few days, will disappear from memory.
But for her mother, every moment of this day would seem like eternity. Donna stood alone,
crying, in a cold, dark room on the pediatric ward where only minutes ago she had been
huddling with her little girl. Sunlight poured into the otherwise dark and barren room,
illuminating the posts of the empty hospital beds occupied days ago by the other
children who have already had surgery. The early light of this Bucharest morning
glistened in the tears as they rolled down Donna's cheeks as she stood, silhouetted against
the window. Slowly she sat and walked to the bed, hunched over as if in excruciating
pain. She broke down into sobs and wails that echoed in the empty room.
Rebecca's mother sat alone on the child's empty bed back downstairs on the ward
during the long hours that her little girl was in surgery.
One can only imagine the thoughts that grip a mother's mind during
this time. Her child's life hangs in the balance, the surgical
team Romanian but with doctors from a foreign land, her little
baby on a steel table with her chest open and her heart exposed.
Donna wiped her tears with a pink napkin, and walked to the other
bed across the room. Rebecca's teddy bear sat companionless on the
wooden night table and when she saw it, Donna began again to weep.
"It is hard, so hard; I am so worried. The whole family is worried,"
was all she said.
Upstairs on the surgical table, nurses and the anesthesiology
staff worked quickly. Rebecca was positioned properly on the
table, her head and shoulders elevated on top of folded towels. Dr. Russo supervised the
exact positioning of her body and the angle of her chest, knowing how he wanted
her positioned for his procedure, and showed the staff where he would make
his entry. Intravenous lines were started, a femoral catheter implanted, electrodes
were attached to her body to feed vital statistics to the
monitors. Scrub nurses set the sterilized table with the stacks
of instruments, needles, tubes, sponges, and everything that
might possibly be needed by the surgeons. A nurse used a swab soaked
in Betadine solution to paint Rebecca's entire chest a bright bronze color that
reflected like motor oil in the glare of surgical lights. The antiseptic
covered her from chin to waist, even though the incision would only be
in the center of her upper chest.
Then, after the sterile drapes covered her entire body except for one bare
patch of chest, the incision was made. The muscles were pulled back,
the pericardium opened, and the heart examined. "Even with the very best diagnostic
tools in the world, one never really knows what to fully expect until the heart
is visible," Dr. Russo has said. Such was the case with Rebecca. Doctors knew
what to expect this morning, but may have been somewhat surprised by the extent
of her deformity. "It was as if there was no pulmonary artery at all," one of the
team remarked.
Dr. Russo examined everything thoroughly. He seemed to be deep in thought,
pausing. Faced with a very extensive problem, one could see that he was coming up with a complex plan of
action. Minutes later, after considering the options, he told the team what he thought they should do, and
that this would be the best that could happen for Rebecca right now, today.
But, he warned, this would not be her only trip to surgery if she were to grow
and to survive. "She's going to need to be followed every six months, and she's
probably going to need more surgeries," Russo told the team even as he was
just getting started on his long course of repair today.
The repair took many hours, and at moments it was an intense atmosphere at the
table as the six hands of three surgeons moved in a difficult and coordinated
symphony in and around the tiny beating heart. Some of the repair was made and
then it became necessary to go on heart bypass, and the perfusion team took over
the responsibility of circulating oxygenated blood through her body while the
pulmonary artery was attached to the aorta. Two sets of surgeons hands held
forceps in place which held vessels in place; Russo's intricate and exacting
stitches pulled the tissue into alignment and tight. The heart was taken back
off bypass, and the heart took over beating out circulation and oxygenating again.
Rebecca's heart rhythms were gently controlled back into range, and the
surgeons tested the repair for proper flow and pressure. When satisfied, they examined
their precise work before closing the layers of tissue back over the
little pump. The mood in the room seemed to be of fatigue, just a little,
but satisfied. "She has a two-to-one shunt, but 80% saturation," Russo announced
to the team. "That's much more than she had before." For today, this was very
good. But she was going to need more surgery as she grew, and as the pulmonary
arteries now joined to the aorta grew larger. Otherwise, her heart would not keep
up with the demand placed on it by her growing body.
Dr. Russo pulled his gloves off with a loud snap, after
pulling tight with layers and layers of suture the wide-open chest. He looked
down on his hours of precise and exacting work; his artistry now covered with a
large bandage with two bloody chest tubes sticking out. "Look!" he gestured broadly with
his hands waving, revealing his Italian heritage, "She was blue, and now - pink!" he said,
his arms spread wide to the room. The repaired heart now circulated richly oxygenated blood. For the
first time in nine months Rebecca had the correct oxygen level flowing through her arteries. Right now,
after surgery, she was better than at any time before in her short life. By tonight, down in ICU, her mother's hands
would be touching her again, and Donna would see Rebecca pink, not blue, for the first time since those few
short minutes after her baby's birth.
Rebecca was taken from surgery to ICU for recovery, today located in a different
ward than the one used earlier in the week, this time to a new intensive care
unit where she was received by three waiting nurses assigned to take
care of only this one little, special girl. Donna, after waiting all this time,
must have been relieved just to know the surgery was finally over.
"The American surgeon, Dr. Russo, must have hands of gold. He is an angel.
He is like God," she said. "I thank him. I wish I could tell him."
With the surgery over, the most fearful part of this day was now finished for Donna.
But Rebecca still faced great danger. When something
goes wrong after open-heart surgery it's usually in the next few days,
sometimes even up to two weeks later. The role that critical care nursing plays in
pediatric cardiothoracic surgery is just as important as what the surgeons do on the
operating table, for it is here - in recovery, and then later in Intensive Care - that the
battle can either be won or lost by the slightest factor. There is no broad margin for error, and
whenever one is dealing with the heart the mortal crisis can arrive suddenly. Sometimes, even with all the
knowledge, all the technology, all the advances of modern medicine, sometimes it just happens despite
everything. A child in
this critical state can rapidly get so far out of balance, so far outside the safe ranges, and do it so very quickly, that sometimes there
is just no coming back from it, there is no miracle.
This can be very difficult to accept, but it is a truth one must fully understand and learn to live with if all these children are to be helped
in any substantial way. Looking at Rebecca, and all the other beautiful faces of the babies on the ward, one must be reminded that these children,
the ones born with highly complicated and serious birth
defects of the heart, are literally born with a death sentence. It is hard to think of it this way, because unlike trauma
patients, or burn patients, they look so normal, they look pretty healthy. Except for the large gauze dressing on their chest, there are really
very few visual clues to hint at how terribly close they are tiptoeing
and tottering along the mortal cliff from one moment to the next. If their heart was functioning enough at the
time of birth to keep them alive at least this long, then sadly it will soon fail as the growing body and
organs increase the demand placed upon the broken little pump. Then it is only a matter of time.
So, without any surgery most - if not all - of these babies will die. That is a certain
fact. But with surgery, some of them will live, and with life they will face
more operations as their bodies continue to grow. This fact is what makes the risk of going through this
worthwhile at all, that some of these children will live and not all of them will die.
Any additional day that a baby spends above ground, in its
mother's loving arms, is a pure victory. Some of them will make it through the next surgery, and the next surgery, and
maybe even the next surgery. They will grow up, they will spend a lifetime being loved by their mothers and
fathers, and on many nights there will be silent tears of thanks streaming down a parent's face as they are tucked into bed.
Maybe in a few decades these early months of life, back when they faced nearly certain death, will
become a distant memory; one brought to mind only with a glimpse of the scar. It is exactly this notion
that helps to keep doctors and nurses and researchers coming back to the hospital day after day, it is not the heartbreak of the
ones who are lost but the joy for the ones who are saved.
Standing at the foot rail and looking at Rebecca's empty bed where her dear, sweet,
and short life came to such an abrupt end on this bright blue Sunday morning,
I felt the need to remind myself of these harsh facts of life. Because while she had already gone from us,
she had not yet gone from this place. I could still feel
her presence, nested up tight against her pillow, and could still see Donna sitting there by her side, holding her
tiny hand and stroking her hair. And there, reflected in Rebecca's eyes, was not only the fear but also a clear view of just
how terribly delicate the balance of her life was at that very moment. For a little over four days,
for almost 100 hours, Rebecca perched in that critical balance between living and dying, holding tightly onto a life that
never got off to a proper beginning. She gave it her best - and only - shot to make it against staggering odds.
That she didn't make it does not mean that her life was in vain. Not by any measure. For those who met her and knew her,
even if only for a few days, Rebecca's life will motivate many people for a very long time
to come. By doing so a lot of children will live, they will make it, and they will go home having
received this gift of life. In this way, Rebecca will live always in their hearts. And in mine, too.
Photographs and story by Donald R. Winslow
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