So here are some entries from my absence...
3/10/15
This morning over the 2 hour course of rounds we had 4
admissions. One was an 8yo boy who probably has a cerebellar tumor (Ataxia,
wide-based gait, dysdiadochokinesia), a 4yo boy neurologically devastated from
kernicterus as an infant with new onset seizures, and a 3 yo boy with R arm
burns secondary to falling into open flames.
Also, another case for which I need the help …
4mosM who presented to OSH with bronchiolitis, but
transferred here for jaundice and hepatomegaly on exam. Per mother, child has
needed transfusions twice in the past. After his 2mos vaccinations he developed
a large hematoma in his thigh that needed to be drained, after which they
transfused him for the first time. At OSH before transfer he had a Hgb of 5, so
was transfused again. Per mother, has been jaundiced his whole life, but only
recently she noticed the “swelling” in his RUQ. Had one sibling who died at age
11mos due to unknown causes (per mother was crying for a week, they never
sought out medical care and she died at home). CBC here is 17>14<196, BMP
normal, AST/ALT 152/68, Alk Phos 986, Alb 5.1, total bili 9.4, PT 24, INR
unreadably high, sickling test negative.
Abdominal ultrasound revealed
homogenous hepatomegaly with normal biliary tree. Mother is HIV negative and
HepBsAg neg, but unsure of other prenatal lab results. Malaria NEG. In addition
to the hepatomegaly, the baby has some periorbital swelling around the right
eye with some proptosis and a dilated non-reactive pupil. The left eye exam is
normal. I need to track down and ophthalmoscope but I am concerned that the
baby has retinoblastoma. Or maybe rhabdomyosarcoma? Neuroblastoma? Retinal
hemorrhage? Is otherwise feeding well and active.
But how do we put all this together? Our differential include
infectious hepatitis (but the LFTs don’t seem elevated enough), obstructive
jaundice 2/2 choledochal cyst or biliary atresia (not consistent with US, but
high alk phos), hemoglobinopathies (could explain need for transfusions and
hepatomegaly), hemophilia (but with hepatomegaly?), malignancy… There seems to
be some disruption of hepatic synthetic function with an elevated INR, but I
can’t explain the normal albumin.
And what about the eye findings?
Retinoblastoma? Can a baby be this well appearing with malignancy? There is so
much going on with this kiddo, I’m not sure I can come to a unifying diagnosis.
What am I missing??? Are the findings unrelated?
Ophtho saw the child this
afternoon and noted a retro-bulbar mass and neuropathy and ?central retinal
vein occlusion and retinal hemorrhage (r/o polycythemia vera, r/o leukemia). Stay tuned.
3/11/15
The hardest part of being here is hitting the end of the
road. Whether it be exhaustion of resources, lack of funds, limitations in
diagnostic workup, or the finality of diagnosis itself, the hardest part is
realizing there is nothing else we can do. I’ve hit this dead end more times
that I can count since being here, and it has never gotten easier.
If you remember, the first patient I was ever called about
when getting here was a young baby with a webbed neck and complete AV Canal
defect. The baby needed surgery, but the family couldn’t afford it. The baby
was in complete heart failure and there was little we could do at that point. I
intubated him and coded him for over an hour before he died. It seems like so
long ago. If I were faced with the same patient today, I would know much better
than to push epi or start chest compressions. I’ve learned the futility of
coding people here. I would have given the baby to the mother and let him die
in her arms. The way that Derrik died with his hand in his mother’s, the way many
of the children take their last breaths within the warmth of a mother’s hug.
There is one cardiac center in all of Cameroon and it is a
couple hours from Mbingo. You can either afford the high price of cardiac
repair or you can’t. Our patients can’t. No payment plans, no exceptions. And
so these children come to Mbingo for affordable medical care even though we can’t
provide them with what they truly need- heart surgery. Currently we have two
young girls on the ward dying of heart failure. One is a 12yo girl with severe
mitral regurg- in desperate need of surgery, but the parents can’t raise the
money. I’m not used to managing heart failure because the children in the states
who need repairs get repaired. I’m trying to make her comfortable, maximize her
meds, but I fear that I am only providing palliative care. What else can I do?
We have an 8yo girl who presented 2 days ago in florid heart failure with
dilation of all ventricles, severe pulmonary hypertension, and calcifications
on her aortic valve (with a murmur so loud you can practically see it). Surely
she also needs a valvuloplasty, but the family can’t afford the bills. So I am
here playing cardiologist on these tiny tachypneic girls, knowing sure well
that they will both likely die on my watch. So here I am, again at the end of
the road. Bed 5 and Bed 10, I am hesitant to learn their names, but today I
will.
Then there is the end of the road when you’ve exhausted your
meds and exhausted your workup and a young mother has exhausted her funds.
There is a sweet 2yo girl named “Blessing” who came in about 3 weeks ago, tiny
for age and visibly afraid of my white skin. She was admitted for fever and
failure to thrive. She was started on NG tube feeds and our full nutrition
protocol. No obvious source of fever could be identified at that time, but we
covered her with broad spectrum antibiotics. Over the following weeks, she
failed to defervesce and failed to gain weight. Some days were good and some
days were horrible. We exhausted our stock of antibiotics, our battery of
tests. We even treated her for both malaria and TB despite a negative workup.
Yet she continues to be a sickly-looking 2yo in bed 6, with the developmental
milestones of a 12 mos old. I suspect a primary immunodeficiency, but I can’t
put my finger on it. She is HIV negative, but she is acting otherwise.
Yesterday mother told us that she can’t afford anymore workup and I can’t say
that I blame her. Here we are, almost 3 weeks later, and the child has barely
gained any weight and is still spiking high fevers. And mother’s whole family
is broke. I can’t help but feel that we have failed this child, but I’m not
sure what else we can do? I believe that she will die at home and no one will
ever have the answer. It is a hard pill to swallow, a lump resting in my
throat. We could not help this child, but still we took what little money they
had.
So we meet the end of the road,
for cardiac patients, for elusive diagnoses, for my dear friend Cedrik.
3/12/15
I’ve spoken again and again about a mother’s love, let me
mention a father’s love that is just as sweet. The little boy’s name is Gabe
and he is 4years old. When he was an infant he has severe jaundice leading to
brain damage (kernicterus). Now he’s 4 yrs old and in the body of a 1yr old. He
doesn’t speak, he doesn’t walk, he can’t even chew his food or control his
bladder. His father brought him to us, desperate, not because he wasn’t doing
what other 4yr olds were doing, but because he felt that his son was in pain
every night. “Every night he wakes up screaming, like something is hurting him,
and his whole body goes stiff. I grab his body and place him on my chest until
he stops screaming and his body loosens up.” Turns out the child is constantly
having seizures, but he has not been seen by a doctor since he was an infant. Like
many children with cerebral palsy, he is severely contracted and with minimal
interactions. But the father loves him with a love that is a privilege to
witness. He carries the child everywhere, he exercises his stiff limbs, he
speaks to him lovingly without ever expecting a response. “How do you feed him?”
I ask him when it hits me that the child doesn’t have a feeding tube. “I mash
up all our food until it is very smooth and then I hold his tongue down like
this with my finger and drop the food into the back of his throat. He sticks
out his tongue when he’s hungry.” The doctor side of me shudders with the thought
of aspiration pneumonia, but the 29yr old side of me thinks it’s the most
beautiful thing I’ve ever heard. It is the love of a father for his son,
complete dedication. I can’t bring myself to try to change this practice. Your son will probably never walk I tell
the father. Our job while you’re here is
to try to help decrease his seizures so that he is more comfortable and to help
you learn more exercises you can do with him to help loosen some of his
contractures.
Two days later was the first night that Gabe did not wake up
screaming and the father was the happiest father in the world. I told him that
the blood work looking at his liver and kidney looked good and he said, “Praise
the Lord, bless you Dokitah”. I certainly cannot take credit for a healthy
couple of organs, but I can appreciate the heaviness of a praised Lord in the
setting of a vegetative state. Gabe and his father will likely go home tomorrow,
but it will not be an easy road for them. But one thing is for sure, that child
knows true love and a father who would give the world for him.
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3/13/15
We lost our internet earlier
this week and probably won’t get it back before I leave. I feel so bad having
no way to reach my family/friends and let them know that I am okay. I know my
parents are probably very worried because I stop contacting people so suddenly.
It’s not the best time to lose internet, alone in West Africa, responsible for
all the sick children in the hospital, no way to look things up, no way to cry
to my boyfriend at the end of a rough day. The house feels even larger now that
the only person I can have a conversation with is myself. The power keeps going
out because of the start of the rainy season and the bugs have all taken
shelter inside. It’s a Friday when I am writing this, I missed dinner because I
was trying to save a baby that I couldn’t save. She was one day old and her
mother’s name was Silvia. Silvia had been pregnant 7 times, but all of her
children had died- either by spontaneous abortion or died in infancy/childhood.
When I saw the baby last night I thought, this
could be it, this could be a child that lives. No pressure or anything. The
baby was delivered early at 34wks due to placenta previa and was in respiratory
distress and blue when I met her. She had been born floppy with apgars of 5, 8,
and 5. We set up a poor man’s bubble CPAP machine with an old water bottle and
she seemed to be making improvements in saturations and work of breathing. No
murmurs, good pulses. TTN, I thought. This morning she looked a little worse,
with O2 sats in the low 80s and still with some grunting. Good air movement, no
crackles, lungs didn’t sound wet. Pushed the tubing a little deeper into the
water bottle, started antibiotics, crossed my fingers when I should’ve been
saying my prayers. Went back to my ward of sick children, stopped by the ICU to
check on my 12yo s/p emergency craniectomy, inquired about the existence of
surfactant, checked to see if the internet was magically working again, and
then got called back to see the baby. Silvia’s baby was dusky, O2 sats 50s then
30s then in the teens. No spontaneous respirations, heart rate dropping. She
looked horrible. The nurse called the chaplain and I told her to let the mother
know that the baby was dying. I asked if she wanted to hold the baby or be in
the room with the baby, but she did not want to see her. And so we went through
the motions of giving her breaths and gentle chest compressions, but there was
nothing else we could do. The baby had been too long without oxygen. Her tiny
lips were purple and her delicate fingers lay limp off the side of the
isolette. She looked like a doll, laying there pale and perfect. I wanted to
pick her up and hold her in my arms, let that be her last moment. I wanted her
to feel the warmth of another human being, feel a moment of love in her short
life. But I just stood at there at her bedside, sweat running down my face, hearing
my own heartbeat instead of hers.
In March 2015, Silvia’s seventh
baby died. If the baby was born in the US, I believe that she would have lived.
How many of her children would have lived? Her neighbors would have refused
life-saving vaccines, scoffed at her 2 years of breastfeeding, but her child
would still be alive right now. But instead she will bury her daughter in a
tiny grave, next to brothers and sisters that never were. How much pain can one
person take? Unimaginable. Take the potential for the most beautiful moment in
a mother’s life then replace it with the most horribly tragic turn of events
and then multiply it by seven. That is Silvia’s life here in Cameroon.
I’ve seen so many young children
die since coming here a month and a half ago, it is something that one would be
blessed to never see. I’m always struck by their little mouths, slightly parted
purple lips, soft and at rest. It’s amazing how different a child looks from
the moment they are taking those last agonal breaths to the moment after I
close their eyelids. You would think they are in a peaceful sleep if it wasn’t
for those tiny purple lips. But they are not sleeping, their bodies are heavy
and their little hands are cold. Their faces take on an entirely different
look, as if they have suddenly become a replica of the person who had just been
alive. It is the doll-like visage of a person in an open-casket, juxtaposed to
their desperate gasping for air. It is quite a phenomenon. And even though all
emotion eventually gives way to grief, in those last moments of transition,
there is a feeling of intense relief. You have to believe that they have
slipped into somewhere that is far better, you believe it because you
desperately hope it to be true. Whether this is a justification for Faith or
not, it doesn’t matter. It is a necessity here and it is the only way to not
crumble with every waking tragedy. Please Lord, bless Silvia’s tiny little
girl, show her love, show her comfort, show her happiness. I believe it to be
true because I can’t bare it any other way.
There is nothing worse than the
death of a child.
_____________________________________________________________________________
3/14/15
Overnight, I was called into the
hospital where I witness one of the most horrible deaths I have ever seen. It
was a 12yr old boy named Caleb who had been outside of his home helping his
mother husk corn when he felt a sharp bite on his left foot and it immediately
started bleeding. They did not see what bit him, but assuming it was a snake
bite, he was brought to a local clinic where his clinical status abruptly
deteriorated. He was slightly altered upon arrival to our hospital at ~2am. The
resident on call quickly sent off labs, administered antivenin, and started
antibiotics. The patient began to have rapid edema of all extremities and within
an hour began vomiting blood. The resident called me around 4am, I told him to
order blood and stabilize him as best he could, as I frantically flipped
through old textbooks and prayed for the internet to return. No such luck. When
I arrived at the bedside the young boy was foaming at the mouth, thrashing
around on the bed with frothy blood spewing from his mouth and nose. I tried to
stabilize him so that he wouldn’t injure himself and he hit me square in the
face, busting open my bottom lip. His lungs were completely flooded, he
appeared to be drowning in his own pulmonary hemorrhage. Eventually he became unresponsive
and frank blood began pouring out of his nose and mouth, saturating the sheets
and anyone that was near him. We suctioned a full bucket of frothy red
secretions from his airway, but there was no end to the flooding. The initial
collection of hemoptysis showed no signs of clotting hours later, his was no
doubt in rapid and horrible DIC. It was too late for the blood products as he
had begun his agonal breathing. I told his mother that he was going to die and
her wails sent lightning down my spine. The other mothers in the room had also
started crying, something I had not seen before. I stood there with his cold
blood on my hands and my warm blood on my lips and I tried to make him
comfortable. His death came quickly and in a moment he was gone, blood still
pouring from his mouth and nostrils. It was a scene from a horror film. No
wonder people are so afraid of snakes.
__________________________________________________________________________
3/15/15
This morning I made a new
friend- his name is Junior (geen-yah) and he is 12 years old. After rounds I
returned to my house to make some coffee and listen to the Sunday church music.
Sundays are nice like that. Around the back of the house came Junior, dressed
in a shiny grey suit and a stick in his hand. “Oh hello,” I said as we both startled
the other, “are you looking for something?” He told me that he was just walking
around while his parents were at chapel and then disappeared around the other
side of the house. Not ten minutes later he reappeared on my back porch and sat
in a chair across from me. “Do you have any games you want to play with me?” he
asked. I told him that I had a deck of cards and we proceeded to play cards
over the next couple of hours. He had trouble teaching me how to play the card
games as I had trouble understanding his accent, but we soon figured each other
out.
As I sat across from him I
thought of the little boy who had died of the snake bite yesterday. Caleb and
Junior are the same age, the same size, the same stage in life. Junior could
just as easily stepped on a snake while helping his mother husk corn and the
tragedy would be his own. As he sat across from me explaining how to score the
card game, I had a vision flash before my eyes of blood pouring from his nose
and mouth. The image shocked me and I quickly snapped back into reality. I
imagine this is a shred of PTSD, probably an image that has been defiantly tattooed
into my memory. I thought of how alive Caleb must have been the day before we
met, his vitality commemorated by my swollen bottom lip and the still open
textbooks strewn across the kitchen table. He was no different than Junior is
at this very moment.
I was reminded how unbelievably
fragile life is, just one wrong step between life and death. It is a snake
bite, a car accident, a spontaneous mutation, a misdirected grape, a slip in
the bathtub, a misplaced inhaler, a moment too long in the birth canal. I never
am more aware of what a blessing a healthy child is than when I am rotating
through the NICU. There is nothing more beautiful than a healthy newborn, all
the things that must go correctly along the way to a well baby’s nursery. It is
a miracle, really. So many people have the luxury of taking this for granted
and that in and of itself is a blessing. But anyone who has worked in the NICU
is denied this naivety and you begin to ask yourself, “how does everything ever
all go correctly?” And for me, this is the foundation of my Faith, the awe of
nature, the humbling of science. But I, like many, grapple with the fact that
the same God who breathes life into a newborn also creates venom in the fangs
of a green mamba. Maybe it is just beyond our human understanding, maybe there
is a greater plan that we are not privy to. But I have to believe that God is
good because I have to. I can’t devalue miracles for not being able to
reconcile tragedies.
The greatest gift that I have
taken from Africa is being able to look across the table at Junior and
recognizing a miracle. I can choose to be paralyzed by the walk across a tight
rope or I can be thankful for my ability to walk. As I’ve mentioned before,
death is a part of life here, but it is a concept that can transcend the
continents. By knowing death, we are truly able to value life. By respecting
the fragility with which we live, we can appreciate every day that our children
are able to play cards with us. Maybe the people of Africa are so devout not because
it provides them with strength amidst tragedy; maybe they are so devout because
they have a greater ability to recognize miracles.
Unbelievable Britt. You last paragraph is so beautiful. Love u
ReplyDeleteJust catching up on your blog. You continue to inspire me everyday. Thank you for putting a real perspective on life. You are so strong. See you soon xoxo
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