Introduction
After leaving Sierra Leone I flew to Ghana
where I had organised to do a medical placement at a regional hospital located
in a small coastal city in the West of the country.
The hospital was full of informative public health signs such as this one.
Writing blog posts about medical placements
is a difficult task for several reasons. First, for reasons of privacy and
professionalism, I must be very careful not to reveal anything that could
identify patients or staff members. Second, as an outsider to the culture about
which I am writing I am aware that I bring my own views and values to bear on
the things that I have observed. I do not wish to sound judgmental about things
that I don’t have the cultural background to fully understand, however I’m a
person of strong convictions and there are certain things that I believe – for
example the right to dignity and compassion in the face of suffering – that I
cannot put aside even in vastly different working environments to the one that
I’m accustomed to in Australia. Third, it is difficult to truly and faithfully
convey, without risk of sensationalising, what it is really like in a hospital
in a developing country to an audience who have never experienced it for
themselves.
As such, I’ve decided to modify my approach
to placement blog posts this time around by writing about one theme of my
placement instead of trying to laboriously recall everything. The theme I’ve
chosen is disability.
I’d like to preface the following
discussion with a note about the people I came across during my placement: the
vast majority of people (doctors, nurses, allied health professionals,
patients, patients’ families) were kind, welcoming, and professional. Ghana is
not a rich country, but nor is it desperately poor (for the sake of comparison,
GDP per capita (Ghana) = USD 1,729; GDP per capita (Sierra Leone) = USD 635;
GDP per capita (Ethiopia) = USD 400). Not once during my placement did I
witness somebody die due to lack of resources at the hospital (qualification: I
did not rotate through the emergency room, and I’m sure that this is a somewhat
different context). Rather, where resources were
blamed, the true cause of the bad outcome was inevitably more complex than a
simple scarcity of resources.
Weekend shenanigans: Nzulezu stilt village
Weekend shenanigans: Kakum national park
Weekend shenanigans: Hahn's cottage
Discrimination and mistreatment of people
with disabilities is a global scourge. To enable the fulfilment of a healthy,
happy, and maximised life, people with disabilities must often be provided with
special services, be they medical, educational or financial. My experience in
developing countries has been that these special resources and facilities are often
not widely available. Ghana was no exception, but what really surprised me in
Ghana was the degree of stigma that people attached to disability. It was as if
people were unwilling, or unable, to look past the disability to see the person
behind the disability. I came across two disabled patients during my time on
the ward: Kwesi “Social”, and Baby X.
Baby X:
Baby X was born by caesarean section at
about 2am during a nightshift that I attended at the delivery ward. Baby X was
one of a set of non-identical twins, and what made her special was that she had
severe hydrocephalus. Hydrocephalus is where there is a build-up of
cerebrospinal fluid (the fluid that bathes and cushions your brain) and in an
infant, whose skull bones are yet to fuse, this leads to a greatly enlarged
cranium. This particular baby’s head was about the size of that normally belonging
to a six-year-old child.
The surgery itself progressed without
incident, and both babies were immediately taken to the adjacent room for
resuscitation as they were born with low Apgar scores. I stayed in the theatre
until the incision was closed and then followed the doctors into the
resuscitation room where the disabled baby was lying on a high-tech
resuscitation table surrounded by three nurses. The baby was not breathing but
otherwise looked well, with muscle tone and good colour. The nurses, however,
were not attempting to resuscitate her, but, rather, were laughing. The doctor
asked them what they were laughing about and they showed us that the baby had a
full set of teeth. The doctor told them that this was beside the point and
asked them why they weren’t resuscitating the baby, to which they responded
that the baby’s heart was not beating. The doctor and I exchanged sceptical
looks at this point and then the doctor asked the nurses to have one more
listen and, unsurprisingly, they were listening to the wrong side of the chest
and when we listened to the other side of the chest the baby had a regular
heart beat with a good pulse rate.
At this point the doctor told the nurses to
suction the baby’s mouth and they refused and the real reason behind their
apparent gross incompetence was clear: they were not going to resuscitate a
disabled child. Instead, they wrapped the baby in cloth and took it to show the
mother, which was horrific as they unwrapped the baby next to the bed and
showed her the baby’s head and said “this one, not good”.
This baby was then left to die because of
her disability. Without further investigation it is impossible to speculate about
the prognosis for this child (the cause of the hydrocephalus, its severity, and
its impact on the development of the cerebral cortex were all unknown, and in a
country with greater resources something like this would have been corrected
surgically and the child would have lived). I think that the ethical issues
around resuscitation of apparently severely disabled infants in a setting like
Ghana are certainly not clear-cut. On the one hand these children are liable to
lead difficult and often tragic lives (like Kwezi, who I’ll get to next), but
on the other hand the systematic refusal to act in the medical best interests
of a child with disabilities stinks of eugenics.
Kwezi “Social” Parker-Wright:
Jen, Olly, and Kwesi
Kwezi is an 18-month old child who was born
with congenital rubella syndrome. This means that, some time during his
gestation (most likely during the first trimester) Kwezi’s mother contracted
rubella, an infectious disease that is not particularly harmful to adults but
may have disastrous consequences for the unborn foetus. In Kwezi’s case this
meant cataracts, severe intellectual disability, a persistent dermatitis, and
the inability to walk* (* I suspect that this is a combination of developmental
delay and neglect).
Kwezi was admitted to hospital with gastroenteritis.
He was accompanied by a social worker and staff members from the orphanage
where he was living before being admitted to the hospital. Kwezi is an
abandoned child; his mother, unwilling to continue to care for a child with
such disabilities, left him in a rubbish bin. Luckily he was found and taken into
State custody. Interestingly, Kwezi’s mother is alive and well, and the social
workers are aware of her identity and are in contact with her (alarmingly, she
is pregnant again). Did Kwezi’s mother face criminal prosecution for the gross
act of child abuse committed when she threw out her child with the trash? Of
course not! Rather, she got what she wanted: a clean slate where the “burden”
of looking after her disabled child was passed on to somebody else.
Far from being a burden, Kwezi is one of
the sweetest and most adorable children who I’ve ever had the pleasure to meet.
He is so easy to please and entertain. To Kwezi, everything is entertaining and
everybody is a potential friend. Here are some photos of him:
Kwesi and Olly
Not actually allowed to take photos of patients, but he wasn't a patient at the time (yay loopholes!!!)
I met Kwezi on the first Friday of my
placement, the day that he was admitted. On that day he was very sick. On
Monday’s ward rounds I saw him again and his physical condition had improved greatly,
so the doctors formally discharged him from the hospital. On Tuesday, he was
still there, and two of the nursing students on the ward, Olly and Jen, told me
that the other mothers in Kwezi’s ward (one of two small annex wards where
mostly hopeless cases – social work cases and children suffering from HIV –
were accommodated) had told them that the social workers had not been on the
ward since the previous Friday. This was a huge problem because the hospital
does not provide essential care services such as feeding and bathing, so patients
are entirely dependent on their families or other carers for these services. As
such, Kwezi had not been bathed, had his nappy changed, or fed (except for
small bits of milk by the other mothers in the room who did not want them to
die). Olly and Jen were on the case, and spent the remainder of their time in
Ghana (almost 3 weeks) doing these things for Kwezi as he remained in the
hospital, abandoned for the second time in his short life. A lovely cleaner
from the hospital, Aunty Didi, also took it upon herself to care for Kwezi.
Witnessing the kindness and compassion of these three people was a great
antidote to witnessing what went down with the orphanage workers when they
simply abandoned him.
Over the following week, we were told by
one of the head nurses that she had sought an injunction (court order) for
Kwezi to be removed from his current orphanage due to their gross negligence. I
was pleased to hear that such a remedy is available and, in this case, was
granted. The problem then was that no other orphanage was willing to take him
and he remained in hospital for over two weeks after his discharge (at one
point, actually on my birthday after we took him to a local hotel to relax by
the pool, which turned out to be a bit of a failure due to a massive thunder
storm that afternoon, he was re-admitted as he’d acquired pneumonia whilst
living on a ward full of sick children, which is hardly surprising). On my
final weekend in Ghana a group of us students visited an orphanage outside of
Takoradi, and whilst there we got the impression that it was a place where Kwezi
would be given proper care if we were willing to fund the expenses that the
orphanage would incur in treating his disabilities (which obviously we were).
We mentioned this to the staff at the hospital and tried to contact the social
worker (unfortunately I ended up leaving Takoradi less than 24 hours later at
very short notice, so ceased to be involved in the matter). The problem was
that the social worker was extremely difficult to contact and then suddenly,
without notice, Kwezi was taken from hospital and transferred to an orphanage
in Accra.
We were told by the nurses at the hospital,
who have seen many cases like this one, that most orphanages want children like
Kwezi to die and will do their best to neglect the children in the hope that
this will happen. They told us that this is inevitable and that there is
nothing that we can do about it. I disagree; I think that with sufficient
publicity and international attention Kwezi will become an awkward
embarrassment for them to neglect. Luckily for Kwezi, he met Olly and Jen, who
not only provided for his basic survival needs whilst abandoned in hospital but
have also set up a fund for Kwezi. The aim of this fund is to provide Kwezi
with what he needs to maximise his quality of life, ie, cataract surgery for
his eyesight, physiotherapy for his walking, and a teaching assistant to provide
him with intellectual stimulation at a level appropriate to his disability.
Moreover, I hope that the existence of a fund will pressure the orphanage where
Kwezi is currently residing to actually feed him and care for him. Afterall,
it’s easy to throw an unwanted disabled child out with the trash, but it’s
harder to do this when an international audience is watching.
Here’s the link to the page for the Kwezi
fund: https://www.facebook.com/thekwesifund?fref=ts
Note:
I also wanted to write about 2 other
themes: poverty and education in healthcare seeking behaviour, and the
accountability of negligent staff and parents in the context of a paediatrics
ward. However, I’m struggling to do this so have decided to leave these things
out of my blog. Apologies for such a narrow post – some things are a bit too
hard to write about in a public forum.
Elmina castle on Cape Coast
