On January 4th as Baylor was reopening after the holiday break,
my counterpart and I got word that one of our teens whom we both knew well had
been admitted to Bugando Hospital. We heard that her condition wasn't good, and
went to see her in the ward. It turned out that 'wasn't good' was an
understatement. She was literally unrecognizable, starving to death, and
suffering from a massive infection in her leg that had yet to even be examined
by a doctor at the hospital. After an initial breakdown, I tried to pull myself
together and figure out what to do. I couldn't leave her there, laying in
sheets that hadn't been changed in days, full of blood, puss, and urine. I
spoke to a few other women in the room only to find out there was no one taking
care of her, only two young men who were allowed to come in the mornings and
evenings during visiting hours - her brothers. It was clear no one was taking
care of her, advocating for her, or simply being with her during this time and
I know you all know me well enough to know that wasn't something I was going to
walk away from. Since that day I've hardly left Hafsa's side.
Literally shaking, I went to three different wards to find clean
sheets. I changed her clothes and gave her her first bath in weeks. I started
to build relationships with the nurses and get more information about what
happened, what was being done, and what I could do. I started pulling every
doctor I saw into her room. She had been neglected by her doctors and I needed
to know who I was supposed to be talking to to get her treated. A few friends
who are doctors at Bugando came to see her and made recommendations, but as I
learned more and more about the politics and bureaucracy of the hospital I
began to realize there was little any of them could do without direct
consultations from her doctor.
I spent those first two nights at the hospital, trying to get
her re-hydrated and to hold some food down. Her IV hadn't been changed and no
one was monitoring her fluids, or changing them at this point until I asked
them to. After all these hours at the hospital I noticed she wasn't receiving
her medications, antibiotics, pneumonia prophylaxis, etc. It seemed like no one
really cared to help her get better, and I felt incredibly alone. Becoming the
primary caregiver for a person who was by all assessments dying was one thing,
but life in the ward was icing on the cake. Huge rats scurried around, women
moaned and cried in pain, two in her room died. Nurses took naps and made chai
while patients laid scared and alone in their beds, doctors made rounds twice a
week with no follow up and seemingly no drive to help their patients recover.
I won't go into all the details about what the next two weeks
entailed, they are kind of all a blur. Every time it seemed like we were making
some progress and celebrating small victories like holding some liquids down,
finally finding a surgeon to put a central line in her, getting her catheter
changed, something worse would happen - her central line would come out, she
would vomit for hours, or I simply couldn't find a nurse to show me how to help
her use a bedpan. I felt like Hafsa and I were making tiny steps forward and
big steps backward. I began to accept that she probably wasn't going to make it
and that my role was simply to make her comfortable, and make sure she didn't
die alone.
Baylor finally stepped in and started to help, first by
advocating for her and transferring her to be looked after by a different
doctor, and second by raising funds for her to get a "simple"
cleaning on her leg that should have been done weeks ago. Had the cleaning
procedure been done when she was first admitted, the infection could have been
contained and they probably wouldn't have had to amputate her entire leg, which
they had to do on Saturday January 12th. Try holding a 16 year old girl's hand
while a nurse tells her that her leg was amputated, it was heartbreaking. I
felt that with the infection in her leg gone and working with a Bugando doctor
that finally seemed to care about his patients, the rest of her body could
finally have a chance to heal, things were looking up and she was going to make
it. But after a few days of not being able to hold any fluids or food down they
inserted a feeding tube (which she pulled out hours later after being left
unattended for a short time). The second procedure on her leg was too much and
last week her doctor informed me that he was afraid she had entered into
multiple organ failure. After a long fight that she was determined to win, her
body finally couldn't handle it anymore and she died early last Thursday morning.
Throughout
all of this I've seen things that I couldn't have imagined happening in a
hospital, blatant negligence and disregard for patient rights and human life.
Every day brought a new challenge or the return of an old one, we simply
couldn't keep up. I was completely exhausted mentally, physically, and
emotionally, trying my best to take care of myself while at the same time
making sure Hafsa's last few weeks were spent fighting for her care and her
life, not sitting back and watching her dignity slip away. The last few weeks
and her passing has been incredibly hard on me, but the support Baylor staff
has provided has been amazing. I am resuming my responsibilities at work slowly
this week, and spending time with Hafsa's brothers and her 1 year old son. I
know that only time will heal, but the hardest part was that this was all
preventable if a few people would have just done their jobs from day 1.
