For
the first two days, San and I tried to arrange our schedules so that one of us
would be in the Pediatric Ward with Karin all through the 24-hour day. But in
1971 the Hospital had no place for parents to stay overnight in her room. Nor
was the waiting area dedicated for overnight use by parents or relatives. So we
wound up sleeping in a recliner chair in the hallway right outside her room.
Which basically meant that we didn’t sleep at all those two nights. Not good.
Those sleepless nights convinced us that we should arrive at the Hospital before
7:00 AM each morning, stay until around 9:00 PM, and return home to sleep. That
way we could get some rest and be sure we would be there during the day when
Karin would need us most. It was the best we could do under the circumstances.
Our
most serious problem was that the nursing staff was either too busy or too
stupid (we never did determine which it was) to realize that a 16-month-old
baby could not feed herself. And she was in a Pediatric Ward for Christ’s sake!
By the time we would arrive in the morning her food was either gone or was too
cold, or too hot, to be eaten. After two days of complaining to the nursing
staff, who incidentally steadfastly maintained that Karin simply was not hungry
and didn’t want to eat, I took matters in my own hands, arriving at 6:15 to see
what was really happening. I hid in the bathroom with the door half closed so I
could see nearly the entire room. At 6:30 a food tray was noisily deposited on
a metal rack attached to Karin’s bed by a food server, who swung the rack over
the bed and left. Karin, naturally, was awakened by the clatter. She sat up and
realized that her breakfast was being served, so to speak. She picked up a
piece of unbuttered toast that she could see under one of the metal lids that
had been slightly knocked off the plate and began nibbling on it. That was as
far as she got. She was unable reach the hot oatmeal or the scrambled eggs,
which were positioned so far under the lid as to be totally inaccessible for an
infant. She was also unable to open the carton of milk or the apple juice. Duh.
Naturally, that required more strength and coordination that she, or any
toddler possessed.
As
I stood in the bathroom I grew angrier and angrier. What the hell was going on?
How could they neglect our baby like that? A food server showed up and removed
the tray around 7:15. At 7:30 exactly I stood before the Director of Nursing
and proceeded to give her a piece of my mind. I was properly infuriated and let
her know it. I mean, Karin was in the care of the Pediatrics Ward. And they
couldn’t figure out that as a toddler she was unable to feed herself? After
letting me blow off considerable steam she apologized profusely and assured me
that the problem would be corrected. Right.
When
the very same thing happened the next morning San and I determined to take
matters in our own hands. This was our daughter. We were not about to let her
go hungry. So, rather than kill ourselves with anger and acrimonious feelings,
no matter how well justified, we began arriving at her bedside around 6:45
every morning and feeding her ourselves. Which we did for her entire stay at
the Hospital. But it pissed us off in the extreme that the Pediatrics Ward of a
major hospital would be managed in such a preposterous manner. Be assured that
I wrote a scathing letter to the President of the Hospital explaining the
situation in great detail and demanding to know if that was the proper way to
run a hospital or to treat an infant.
The
day before the operation, Dr. White performed the cardiac catheterization to
locate the PDA and measure its size. Karin, as usual, was a gem throughout the
procedure and lay absolutely still despite the “discomfort” White said she
would experience. Don’t you love the way doctors euphemistically refer to pain.
Discomfort my ass.
Afterwards
Dr. White told us that the PDA was much larger than they had anticipated and
that we made the right decision in scheduling the operation as soon as possible.
It appeared that the shunt was growing faster than her body. He congratulated
us on facing the issue squarely and scheduling the operation for March. June
might have been too late, he said. Which really sobered the shit out of us. Too
late? Holy shit. That’s the first time we realized the seriousness of Karin’s
condition. Too late meant White thought she would not have been able to survive
a June operation. Whoa. Talk about scary.
That
night, one of the third-year thoracic residents working with Dr. Gago came in
to examine Karin. He casually mentioned that Karin was an unusual PDA patient.
When I questioned him about what he meant he said she was an extremely healthy
baby. And that in itself made her unusual. Most young children with PDAs had a
variety of physical symptoms, ranging from mild to very serious. He ran through
a fairly long list, of which I remember only a few. A newborn with
PDA may experience fast breathing or even have difficulty breathing. They have
more frequent respiratory infections that tend to flare into pneumonia. They
tire more easily with exercise. Their extremities, including fingers, toes,
nose and lips, may be cyanotic (bluish) from poor circulation. And frequently
they grow very slowly. Even in the absence of other symptoms, the turbulent
flow of blood through the PDA puts the child at a higher risk for a serious
infection known as endocarditis.
He said that the only symptom she
exhibited, other than the murmur itself, was a very slight aortic arch. When I
asked what that was he pointed to her chest and said that you can see how her
chest rose slightly from the underlying pressure of the PDA. When I was unable
to see it he repositioned Karin in the bed until we were standing directly
behind her left shoulder.
“See,” he said, lightly touching the area
with his finger. “There it is. A very slight arch on this side of her chest.”
And sure enough, I could see it. I was amazed. It was the first external sign
that Karin had congenital heart disease. And we had never noticed. Not that we
would have since it was so very slight.
The night before the operation neither of
us slept. San and I tossed and turned in synch until, at 3:00, I got up and
read a light novel until 5:00. Dr. Gago had told us Karin would be taken to
surgery at 6:00. The operation would begin at 8:00 and would be over between
10:00 and 11:00. Then she would be taken the post-op recovery floor where she
would be until released around 1:00 or slightly later.
We arrived at the Hospital just in time to
kiss Karin goodbye. She was already a little groggy from pre-op medication and
was very sleepy-sweet. We hated to let her go and after the attendant wheeled
her out we held each other tightly cried for a few minutes. After that we went
down to the cafeteria and bought breakfasts we couldn’t eat.
After pacing paced around aimlessly until
9:30, we went up to the post-op recovery waiting room, with all the other
frazzled and worried-looking relatives. Where we waited, and waited, and
waited. Eleven o’clock came and went. And then twelve, twelve-thirty. At 1:00 I
heard a stat (emergency) call for Drs. Gago and White. I don’t believe San
heard it but I was on pins and needles. If she had missed it I was not about to
tell her and get her crazy with worry, which was her modus operandi. But I
started to sweat. Then it was 2:00, 2:30, 3:00. What good does it do to get
upset, I asked myself, desperately trying to relax but losing the battle. Gago
and White had dozens of patients in recovery, I told myself. It could be any of
them. Don’t panic. Quit trembling, I ordered. Fat fucking chance of that.
At
3:00 a very serious Dr. Gago came into the waiting room and squatted down in
front of us. We both were taken by surprise. Previously he had always been
formal. For the first time I saw a look of uncertainty and concern in his eyes.
He was grimly serious. My heart fluttered in my chest and stopped. I immediately
suspected the worst.
In
a low whisper, he said, “There’s not much time so I have to tell you this in a
hurry. The operation was over by 10:00. Everything went as we had expected. However,
the shunt was much larger than we had imagined, even with the arteriogram.
Karin was then taken up to post-op recovery. Her pressure was a normal post-op
180 over 90. She was resting comfortably, coming out of the anesthesia. Shortly
after 12:30 her blood pressure began to rise. By 12:45 it was 250 over 125. At
1:00 it hit 300 and became immeasurable. The staff cardiologist injected
medication through her chest wall directly into her heart in a emergency
attempt to relieve the pressure. Unfortunately, it remained over 300 for at
least six minutes. Since that time the pressure has fluctuated between 280 and
295. She has been moved to the Cardiac Intensive Care Unit. We are doing
everything in our power to reduce the blood pressure. Dr. White has calls into
his colleagues at the Mayo Clinic and the Cleveland Heart Clinic. Frankly
neither of us have had this situation occur in such a small child.” He looked
intently at each of us in turn. “We are doing everything possible to save her.”
“Oh
my God, oh my God!” San exclaimed, looking like her world had just collapsed.
“My poor baby! What happened?”
“She
has developed acute pulmonary hypertension, Mrs. Ernst.”
Those
awful, awful words. I couldn’t force my lungs to work. There was an enormous
band constricting my chest. I tried to think but couldn’t organize coherent
thoughts.
“Please,”
I pleaded for him to give us a way out. “Tell us her chances.”
He
didn’t flinch, just hit us with it straight and hard. “I’m afraid the prognosis
is not favorable. If we are unable to reduce her blood pressure quickly her
body will not be able to handle the stress much longer. At this moment she is
in a very critical condition. Her chances for survival are less than one in
ten. Perhaps even much less than that.”
Even
four decades after that horrible event I cannot think or write about it without
hot tears in my eyes and a constricted throat. The remembered pain and emotion
almost overwhelm me.
“When
can we see her,” I asked, trying to control the rising panic.
“Not
today. It’s critically important to stabilize her condition. It will take all
our ability to bring her through the rest of the day to tomorrow. In the
morning we can talk again.”
“What
should we do?” San asked, the pain so evident in her voice and on her face.
“You
should go home and try to relax. There’s nothing you can do here and we will
not be able to tell you much even if you stay.”
He
took out a card and wrote on it. “Here are the names of the head nurses in the
Cardiac Intensive Care Unit. The first one is on duty right now. The second
will come on with the second shift. Call them for information once every two
hours. Please, no more than that. They will be very, very busy. I will call you
personally if any significant change occurs, day or night.”
My entire
body trembled violently, as if I had been struck by a tremendously powerful
blow. I knew exactly what he meant. “Significant change” meant he thought Karin
was going to die. Oh, my God. Oh, my God. What could we do? Oh, Jesus.
He
stood up and gently helped San to her feet. Her face was a frozen, terrified
mask. She looked completely numb, dazed, and confused beyond comprehension.
“Mrs.
Ernst, you should go home and try to rest as much as possible. We will need you
to be strong for tomorrow. There’s nothing you can do now but pray.”
He
was telling us that he thought Karin would die during the night or the next day.
I nearly collapsed right there but somehow was able to stay on my feet. It was
too horrible a prospect to think about.
He
took a business card out of his white coat and handed it to me. “My home phone
number is listed on my business card. Call me if you need to talk. Now, please,
go home and lie down. You’ve both had a terrible shock.”
I
can’t remember any of the rest of that day. For all I know we got home via
magic carpet. I called the Cardiac Intensive Care nurse every two hours on the
nose. The only thing I was told was that Karin’s condition remained unchanged.
Which told me nothing and all too much at once. When I asked for details, like
temperature and blood pressure, I was told that only the doctor could give out
that information. After the third call and the same response I was so pissed
off that I called Gago’s home and left a message for him to call me. When he
called a few minutes later I complained bitterly that not only could we not see
our daughter we were refused information about her condition. I told him that
that was bullshit and wanted to know immediately how she was doing.
“Approximately
ten minutes ago your daughter’s temperature was 104º Fahrenheit, and the
pressure was stable at 285. She is resting quietly. We are continuing
medication to reduce the pressure and bring down the fever. I must apologize,
Mr. Ernst, but the nurse in prohibited by State law from giving you the
specific information you desire. Call my office tomorrow morning between 7:00
and 7:15 and I’ll be able to provide the latest update on her condition.”
And
that was that for the rest of the evening and perhaps the longest and worst
night of my life. Or so I thought at the time.
Poor
San remembers almost nothing of those details. She has blocked them out almost
completely. But sweet Jesus, how she suffered. Her pain was tangible. She was
being twisted in a mental rack that was tearing her apart. Her mother,
Virginia, was staying with us to take care of David and she tried to comfort
San as well. To no avail.
Promptly
at 7:00 the next morning I called Gago’s office. His nurse told me he was
already in surgery but Karin’s condition was substantially unchanged: 104º
fever and pressure of 280. Her condition was still very critical.
I
called Drew Nazzaro at home and told him what was going on. He asked me if
there was anything his wife, Lala, and he could do to help us. Thanks, but
there’s nothing, I told him. He said he would tell Ross Pierson, the Chairman,
and the rest of the faculty. Keep a positive attitude and keep praying. Good
advice but . . .
At
8:30 the Hospital called and asked if we could meet with the chief Social
Worker at 10:00 that morning. San took the call and couldn’t figure out what
they wanted. I didn’t tumble to it either. Had no idea whatsoever. Shows you
how the intellect is dulled by terrible stress.
Promptly
at 10:00 we showed up at the Social Work Office and were introduced to the
young woman who was the Department head. She appeared to be in her late
twenties or early thirties. We sat in her office and listened dully as she
talked about the seriousness of Karin’s condition and the possibility of her
not recovering. She specifically asked us to consider that Karin was not going
to survive. Those were her exact words. Not survive. That’s when I realized
that the Hospital thought Karin was going to die and was doing its official
best to notify us. San sat expressionlessly through the entire discussion. Her
face was made of stone. When the interview was over and we were walking to the
elevator San said in a very quizzical tone, “Wonder what that was all about.”
I
knew she had blocked out the entire past half hour so I just shrugged my
shoulders and said something about the Hospital covering its ass. Today, she
simply can not remember any of the meeting or what was said. For years she
denied it happened at all. And even accused me of making it up. No way. The
meeting happened exactly as recorded above.
A
few minutes later we met Dr. Gago in the Intensive Care waiting room.
“The
news I have is not good. But I caution you not to get overly upset about it
either. Karin’s condition is relatively unchanged although her pressure is down
somewhat. During the night it fell as low as 260. A few minutes ago it was just
over 275 and her temperature 103.5º. Dr. White and I have called twelve heart
and pediatric centers in the country last night and this morning without
achieving positive results. We could not find even one similar case to point
the way to a treatment regime that we have not already considered.”
San
interrupted him in a voice so low as to nearly be indistinct. “You mean no
other children who had heart surgery developed hypertension?”
“Oh,
yes. Quite a few, in fact. But none as acutely as Karin. Their pressures were
not as elevated nor were they as sustained for such a long period. Most of
those children recovered fairly swiftly or . . .”
“They
died.” I finished the thought for him. Wanting San to hear it from someone’s
lips.
“Yes,”
he said.” Usually in a matter of hours. One of Dr. White’s residents has been
researching pediatric PDAs since 5:00 yesterday afternoon but has not been able
to find one case like Karin’s.”
I
knew he meant a case where an infant patient developed acute hypertension and
lived for twenty-four hours.
He
cleared his throat, shifting uncomfortably the chair. It was obvious the bad
news was not over.
“In
a few minutes you will be permitted to see Karin. But only for about ten
minutes. I must caution you as to her physical appearance. She is on a heart
monitor and is being fed intravenously. Her body is swollen in reaction to the
medication she has received. She does not look like the little girl you saw
yesterday morning. Please, please try to remain calm when you are with her. If
one or both of you breaks down it will do no one any good and could even affect
your daughter’s health negatively. I’m not trying to be harsh but this is very
important. Do you understand?”
“Yes.”
San answered for both of us.
“Now
for the difficult part. We have two very serious problems to contend with. The
first is obviously the hypertension. If we do not reduce it then she will die.
To reduce the pressure we have been giving her adult dosages of medication.
Unfortunately, she is not responding. We can continue this course only for a
very short time because the medication is so potent its side effects in a child
this small will be fatal. Therefore, sometime this afternoon we must
discontinue the pressure reduction drugs. If her pressure increases or even
stays at the same high level then we have no alternative medical treatment and
will be helpless to proceed.” He stopped, waiting for our response.
“What
else can you do?” San asked in a small, tight voice.
“Nothing,
I’m afraid. No other course of action is available.”
“We
understand the problem and agree with what you and Dr. White are doing,” I
said, knowing that’s what he needed to hear. “But what’s the second problem you
mentioned?” Anything to get off that terrible topic.
“There’s
a distinct possibility Karin’s lungs are filling with fluids. We are unable to
administer the proper medication because of potential adverse interaction with
the pressure reduction drugs already in her body. And because her liver may
become irreversibly damaged if we do.”
“Pneumonia,”
I said. “And you can’t give her the required antibiotics.”
“Precisely.
So we must try to get Karin to drive the fluids from her lungs herself.”
“How,”
San asked.
“She
must be made to exercise her chest and lungs. By crying. That way she might be
able to drive out the fluids and avoid pneumonia.” Gago looked at me. “That’s
why I asked you to bring her favorite doll or estuffed animal.”
Ridiculous,
but the only word I noted was the Hispanic accented “estuffed.” It was the
first time his Latin accent was noticeable. That’s when I understood the
pressure he was under.
“Mr.
Ernst,” he prompted.
“Oh,
pardon me. I was daydreaming. Yes, I brought her favorite little doll.” I
pulled a cute stuffed animal out of a paper bag I had brought with me. It was
the tiger from Winnie the Pooh and Tigger too. Good old Tigger, Karin’s
favorite.
San
gave me a look of death. “When did you get that?” she demanded.
“This
morning. Dr. Gago called while you were in the shower.”
“Why
didn’t you tell me?” She was clearly irritated.
“I guess
I forgot.” I hadn’t told her because I knew she would worry herself sick
wondering why we needed it. But I had guessed why from what Gago had told me on
the phone. It had not been a subject I wanted to discuss with San at home or on
the drive to the hospital.
When
we entered the Cardiac Intensive Care Unit it was as though we had descended
into the bowels of Hell. Not that it was dark or dirty or anything remotely
like that but it was filled with such tangible human suffering. Oh God, God,
that we never ever again have to go through such a soul racking, terrible
experience. Our poor little daughter, so beautiful, so happy, so full of life,
lay in a huge oversized bed. Her arms and legs weighted down with sandbags so
she could not move and rip out all the tubes running in and out of her tiny,
violated body. Tubes into her nose, her chest, her arms, her groin, her ankle.
A huge blood-stained bandage covered her chest. Her small legs were bright red,
swollen like fat sausages. In her right leg alone I counted twenty-eight needle
punctures, a tribute to the intense effort to save her life. When I gently
touched her leg I found it hot, as if on fire. Hotter than it would be just
from the fever. The needle marks and the heat were a result of all the
injections she had been given. How could I not weep for her suffering.
It
took a superhuman effort for me not to fall on my knees and sob like a baby.
Her right arm was wrapped with a small blood pressure cuff and unknown wires
and electrodes were attached to every available piece of skin. And every moment
we were in the Unit all we could hear was that awful, starkly terrifying sound
of the heart monitor Beep Beep Beep
Beep
Beep.
So
horribly irregular. Such a constant reminder of the slim thread from which she
was hanging. With every inordinately long pause between electronic pulses my
heart would stop. Unconsciously, I would hold my breath in white hot fear until
the next beep. My poor, poor baby. With being aware of it huge tears streamed
down my face as I stood, staring at her. Our wonderful, perfect child. Our
angel baby. Even though I made no sound I couldn’t stop crying. It was the
single worst moment of my like, seeing her so helpless. So wounded, so
vulnerable. I could do nothing to help my baby yet in a minute would have to
make her cry. Oh, Christ, I prayed. Please don’t make me do it. Please. I
can’t, I can’t hurt her more than she is now. Please, Jesus . . .
At
that awful moment the nurse took Tigger from me and put the stuffed animal in
Karin’s little hand. She stirred and my heart froze. The nurse released the
weight from her arm so she could cuddle the doll. Karin was unable to see
either of us from where we stood but we could hear her say, “Ti, Ti.” Which was
what she called Tigger. That destroyed all the resolve and composure left in
me.
At
the nurse’s urging we stepped forward to the side of her bed where she could
see us. It took every last ounce of strength I had left to smile through the
salty tears and say, “Hi, Karin. How’s my little girl?”
San
bent over and kissed her face, over and over. Karin began crying, “Mommy,
Mommy.”
And
all the time we could hear the ominous Beep Beep
Beep Beep Beep
Beep.
The
worst part, if a worse part can even be imagined, came ten minutes later when
we had to kiss Karin, wave good-bye, and take Tigger from her hands. Tigger,
her faithful friend she had fallen asleep with every night for nearly a year.
The little pal who was with her constantly.
Karin
struggled to get up, holding her arms out, wailing piteously, “Mommy! Mommy!
Ti! Ti!” And cried, and cried as the nurse gently pushed her back into bed,
strapping her arm down with the weight as we walked out of the Unit. It was the
hardest thing I have had to do in my life. To turn my back and walk away from
my sobbing baby. It was an inexpressible agony. Nothing would ever match the
pain that stabbed my every nerve. By that time we were both reduced to
emotional and physical wrecks without the strength to do anything but stumble
blindly from the room. I don’t know if I was holding San up or she was holding
me. It was a toss-up.
That
horrific scene was repeated at 4:00 in the afternoon and 8:00 that night. The
same sequence, the same results. There’s nothing more I can add to how we felt.
It was a living Hell on Earth.
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