Habari
rafiki,
Leland
often says that life does not go in a straight line. When we left for Kenya on August 31, 2010, we
thought we would stay 2-3 years. Once
there, we realized that establishing a functioning pediatric neurosurgery
service, one that gave excellent care to the children, provided teaching to
residents and fellows, and was an expression of the love of God, might take 6
years. That time frame was our basis for
saying we planned to leave Kenya on September 1, 2016.
Instead,
life happened. Leland’s chronic fatigue syndrome, more accurately referred to
as myalgic encephalomyelitis, has made it impossible for us to continue our
work in Kenya. We returned to Kijabe on
November 1, 2014 to provide coverage for Humphrey during his month-long vacation
(during which he was married) and for Veronicah, our clinical officer, during
her annual leave, train another person to fill my role, and say goodbye to so
many cherished co-workers.
Leland and
I had time last summer to think objectively about the provision of neurosurgery
to children in Kenya. After careful
review of our data concerning outcomes and with the help of Ivan Stewart, the
former executive director of Bethany Kids and a palliative care physician, we developed
guidelines for care. Upon returning to
Kenya and facing the impossibility of one neurosurgeon caring for up to 40
children, we prayerfully and thoughtfully refined those guidelines and
presented them to the medical staff in our last audit. These are developed as guidelines, not as
rigid rules.
--the
census will be limited to 20 patients, including adults
--non-urgent
cases will be housed in the BKKH guest house until a bedspace becomes
available. Elective cases will be
scheduled as time allows.
--patients
whose care would be futile will not be admitted. Instead, counseling will be provided to the
family.
--patients
with severe malnutrition will have nutritional counseling and be discharged
until a target weight is achieved.
--for
children who arrive with pus in their ventricles, the family will be counseled
and sent home. The chaplain will be
involved with the family discussions.
--children
with multiloculated hydrocephalus will be offered a transverse shunt with or
without endoscopy as a one-time treatment.
--use of
antibiotics will be driven by culture results; the use of meropenam should be
exceptional and requires approval by the team as a whole. Vancomycin should be used sparingly.
--for
children with hydranencephaly, the options of no treatment, choroid plexectomy
or shunt will be offered. If any
surgical intervention fails, no further treatment will be offered.
--consideration
of the prognosis should be part of the admission process, daily treatment plan,
and be revisited as the status changes.
The chaplain should be involved as early as possible to counsel mums of
patients with grim prognoses.
It is hard in any setting to
ration care. We believe that it is God’s
will that we continue to offer care to children who are poor and to those who
have disabilities. But we also believe
that offering care in cases of futility is not merciful or just; we need to be
more mindful of our staff and the sustainability of our practice. What Humphrey, Leland, and I have done over
the past 4 years is not sustainable—not for two neurosurgeons and certainly not
for one. We were encouraged that we
found great support for these changes from most of our colleagues.
We look forward to the completion
of Dan and Naomi Ochieng’s residency in Cape Town, SA and their arrival in
Kijabe to carry on the work, probably in 2018.
In the interim, Humphrey Okechi will be the sole neurosurgery consultant,
and we ask for your prayers for him.
Although we have many visiting neurosurgeons scheduled to come over the
next 6 months, the responsibility of the provision of care will be Humphrey’s.
After the
holidays, we had two visitors from UW Madison. Emily Meyer, the nurse
practitioner who I mentored in her final term as a student, and Marcella Andrews,
the pediatric physical therapist with the Spasticity and Movement Disorders
Clinic, came just after Christmas and stayed for nearly 2 weeks. Most of our visitors have come to help
Leland; I was thrilled to have two people who were with me much of the
time. Emily saw a very different
practice of pediatric neurosurgery from what she has experienced in the
States—she tapped ventricles and myelomeningoceles, taught Elizabeth
recognition of heart sounds, and helped keep track of our infections. Marcella gave us a glimpse of what could be
done with pre and postop physiotherapy for our children with hydrocephalus,
spina bifida, and brain tumors. The
teaching she provided to the mums was so needed.
With Emily and Marcella providing needed encouragement, I climbed Mt. Longonot, the volcano near Kijabe. We also went, with Mercy, to Maasai Mara for a safari.
Emily and Marcella enjoyed “shopping” for beaded jewelry with Samuel, the Maasai guard from the Rift Valley Academy. He was in despair after losing 8 out of 12 cows to lions in the forest near his home in Suswa.
In our last weeks in Kijabe, we
had two other visitors; Dan Hansen, a junior faculty neurosurgeon from
University of Iowa, and Ross Green, a medical student from the University of
Arizona.
I love having visitors—not only because it makes rounds much more academic (the mums’ eyes got very big when 9 people, 7 of whom were wazungu, gathered around their beds each morning) but also because their reflections give us “fresh eyes” with which to see the impact of our service. I want to quote from Marcella’s reflections.
Peter Kitunguu, Ross Green, Leland, Dan Hansen, Addisaleam Belete |
I love having visitors—not only because it makes rounds much more academic (the mums’ eyes got very big when 9 people, 7 of whom were wazungu, gathered around their beds each morning) but also because their reflections give us “fresh eyes” with which to see the impact of our service. I want to quote from Marcella’s reflections.
“This is
what Dr. Leland Albright and Susan Ferson have done for the mums with children
who have spina bifida, hydrocephalus and tumors. They have given them a
reason to be thankful. Of course, I don’t believe the mum’s are cursed
because of the birth of this child and I don’t believe it is God’s will
either. The only answers that I could provide for why this has happened
to them would be looking at the science of why (folic acid?) and how (lack of
neural tube closure) but it feels a little too late for these mums right in
front of you. But what I did feel in their presence is enormous
gratitude, not that their child has a disability but that there is a place for
them to come. They did not have to hide or be shunned from their
community but could be together and see they were not alone. During
morning rounds, I watched the mum’s faces and what I saw behind their eyes was
gratitude. They appeared thankful for anything that was offered.
They appeared thankful that this group of people stopped by the bed of their
child and talked about them. Their child mattered. They would point
out certain changes in their child and their opinion mattered. We were
validating them and giving them a voice. They could be thankful for the care
that was provided to them at Kijabe Hospital. One mum asked quietly, “I’m
so thankful my child doesn’t have a big head like that, what is that from
something they eat?” She was thankful even though her child just had a
cancerous tumor removed from his brain. Here at Kijabe hospital they were
encouraged to love their child which is what all mothers want to do.
No matter the surgical outcome or the challenges their child with a
disability may face in an unaccepting culture, these mothers had a place to be
thankful and a child to love. Without Kijabe hospital many of these mums
would have been encouraged by African culture to love their child only in
secrecy, that their child is a curse and it is God’s will. Here these
mums found a place to be thankful, a place of community, a place where they
were heard and where they and their child mattered.”
I want to
say clearly here that Leland and I, Humphrey, Erik Hansen, Ken Muma, and all of
us who work at BKKH are just contributors to what has become the mission. Dick Bransford started operating on children
with hydrocephalus and spina bifida—that wasn’t done in Kenya before him. Dan Poenaru started the academic mission—to
train African physicians to care for these children. We have made our contributions. But, it is important to know that this is not
Dick’s program; it is not Dan’s, or Leland’s or Humphrey’s or Erik’s or
Ken’s. It is God’s program and we are
merely the servants who carry it out.
In my last
few days in Kijabe, I had a lot of “lasts”—last dawn over the rim, last sighting
of the Southern Cross, last sunset over the Rift Valley, last presentation of
the quarterly audit (it was my 16th presentation). I will never again have such a beautiful view
outside my window.
I doubt I will ever
find the daily challenges and fulfillment I found there, either. It is rare in life to find a vocation that
uses every bit of knowledge, skill, and preparation one ever has had—I don’t
expect to find that again. What was
hardest was saying goodbye to so many Kenyan colleagues—Musyoka (my Kenyan
“son”) and his wife and baby daughter, all the nurses, Elizabeth, Mercy. Mercy was the hardest—she is my Kenyan
sister-in-Christ, my comfort in hard and sad times, my encourager, my
friend. We both shed tears during that
goodbye.
dawn in Kijabe |
Mercy and me |
Musyoka, Gladys, and Baby Joy |
During my last days in Kijabe, the new executive director for BK International visited. He asked me what was the most important thing I had done—something that may have made a difference. It took me some moments to think about that—but finally I realized that the most profound moments in my life in Kijabe had been during those times when Mercy or Pastor Agnes and I had counseled mums of children whose care was medically futile. There was no medicine or surgery that would benefit their child. Elizabeth Njoroge and I remarked that we are so grateful that God called us to be nurses—because unlike surgeons or even medical doctors, nurses always have something to offer. Even when no medicine or surgery can help, the family can be comforted; the child’s pain can be eased, the hope that we have in Christ can be shared. As nurses, we are able to be with the patients and families—not to cure, but to comfort. My time in Kijabe was filled with those opportunities.
Leland
returned to the US on January 16, 2015; I returned on January 20. We now live in our beautifully renovated
bunglalow in La Grange Park, IL.
Sparkling clear water comes out of the tap EVERY TIME it is turned
on. Our oven actually gets hot enough to
bake my home-baked pizza. It is a wonder
living here, and we give thanks every day for all of our blessings. But, I think, a part of me will always remain
in Kijabe.
We don’t
know what God has in His plans for us—Leland has entered a year-long online
course in Theology and Ministry with Princeton Theological Seminary. I have started working on my trains—my Dad
had a train set which he gave to me; I have spent much of my adult life
planning to set up the trains. But, I
know God has something set aside for each of us to do—we are looking forward to
the next chapter in our lives. He has
promised great things:
From you comes the theme of my
praise in the great assembly; before those who fear you will I fulfill my vows. The poor will eat and be satisfied; they who
see the Lord will praise him---may your hearts live forever!
All the ends of the earth will
remember and turn to the Lord, and all the families of the nations will bow
down before him, for dominion belongs to the Lord and he rules over the
nations.
All the rich of the earth will feast
and worship; all who go down to the dust will kneel before him—those who cannot
keep themselves alive. Posterity will
serve him; future generations will be told about the Lord. They will proclaim his righteousness to a
people yet unborn—for he has done it.
Psalm 22: 25-31
And we know that in all things God
works for the good of those who love him, who have been called according to his
purpose. Romans 8: 28
Take care, God bless, Asante sana (thank you very much), Kwaheri (goodbye),