Full Disclosure

What if I told you that you have a diease?


It has no cure.  There is no medicine for you here.  I tell you the name of this disease but you have never heard of it.  There are no books in which to read about it, no internet to google.


I tell you that the disease will infect your spouse and your children.  It will be the cause of your death.  Your children will be sick with it and you will die before you are old. 


If you are unmarried, I tell you that you should not even marry.  You should just stay alone.


Others will look at you and wonder what this disease is.  They will whisper and avoid your touch.


I tell you the truth and there is fear, wild and painful.  You have seen others die, slow and alone.  There is no future with this disease.  So maybe you will strike out in hopeless hysteria.  Maybe you will drink pesticide and feed it to your children.  Maybe you will try to abort your unborn child to save it from this disease.  Maybe you will stab your husband because you think it is he that gave to you.


Maybe it is better that I don't tell you at all.  When you come to me, saying, "Doctor, what is this thing that makes me sick and weak?" maybe I just give you antibiotics or vitamins.  Maybe I say it is something common and tell you that it is okay.  You will leave and you will trust me because I am a doctor.  You will feel better, hoping in this medicine, this false hope, that I have doled out in tablet form.  Then you will feel the sickness again and you will just think the thing is back.  Really it never went away but I am gone and I don't have to see your face anymore.  And I feel better because you felt better and you thanked me when you left.


So which do you prefer?

What if I told you now...that everything I have mentioned above....I have seen occur in Kenya and Sudan when it comes to one disease: HIV.

The diagnosis of HIV continues to be surrounded with stigma and prejudice.  Very strict cultural traditions must be adherred to when it comes to the diagnosis and disclosure of HIV.  Here in Kenya, there is a special counseling team or nurse that discloses results on the OB ward.  It is very culturally unacceptable to just go to someone and give bad news; instead it is given in a very drawn-out and redundant manner.  I have learned to accept and appreciate this cultural nuance.  On a side-note, I have also seen bad news given - and handled- very badly with patients being prone to hysterics and often inflicting harm to themselves and others.

In southern Sudan, at this moment, there is a battle raging.  This year, my team decided to bring and perform HIV tests.  Primarily the goal was to use this on potential transports.  But we soon found patients that we suspected had the disease. 

They did.

Within 48 hours, we stopped testing, due to the overwhelming amount of positive tests.  This area is very rural and very uneducated.  Imagine not even knowing what HIV is.  They have had no education and have no treatment in this area, despite having access to a Medicins Sans Frontiers aka MSF (Doctors Without Borders) clinic. 

We were very quickly faced with a quandry.  How do you tell someone that they have a disease that they've never heard of?  How do you tell them about all the horrible aspects of not having treatment?

Like Kenya, the process of breaking bad news in Sudan is a very time-consuming process.  In the US, we are taught as physicians that bad news should be given gently, but very honestly and directly.  It did not take long for a cultural debate to rise among team members as to how to break this bad - and volatile - news to this community.

Let me digress for a moment:  I recently read about a book for missionary kids.  It explores the issues of moving from a home culture to a foreign culture and how this changes them.  The home culture is described as yellow, the new culture as blue.  After living in the new culture a bit, the missionary kid discoveres he is green; his way of thinking, speaking, acting, eating - it has all changed a little.  It is not like home, it is not like the new place exactly, it is some mix of the two. 

In Sudan, sitting under a tree, in the hot hot sun, I discovered that what I have known for months - I am not Kenyan, but I am not exactly just American anymore either.  I dont always agree with the new ideas and things that I am learning and observing, but it is the way of life here.  As I debated with people I respect greatly - and once agreed with completely - I was overcome with a crushing sadness that I am alone in ways that I have never been before.  It was a feeling of not belonging anywhere. 

The US team desperately wanted to give the news to the Sudanese their way, on their timetable - to ensure it was done right.  And in the US, that is how it should be done.  The Sudanese elders wanted the news to be given - you guessed it! - in their way, on their timetable - again, to ensure it was done right.  And in Sudan, that is how it should be done. 

Finally, a joint decision was made - we would tell them that they had a bad blood test and more information would follow as it was available.

The town council asked us to meet with the local MSF office to ask if they would aid the community in HIV education.  The goal of the council was: first - mass education campaign, followed by, with the help of MSF, making medicines available.  All finally resulting in treatment for those affected.  I concurred.  In retrospect, it probably wasn't incrediably helpful for us to test for a disease that was unknown to the population and also, test a population that had no access to care.  A hundred times I have wondered - do I now wish we had never done that first test?  Do I wish I now didn't know the problem existed? Or maybe, I wish we'd just done it in a better way.....

Regardless, MSF was not in agreement with our assessment.  They were not willing to help with education or treatment, nor were they enthusiastic about us having done the initial testing.  I was told by someone at the meeting that MSF has decided not to disclose any positive HIV results to patients due to the cultural and social implications.

So, let me ask you again.

What if I told you that you have a disease?  You don't understand what it is, only that I am saying that there is no cure and there is no treatment.  You will pass it to your children and your spouse.


Or maybe I don't tell you at all.  You come to me because you are sick.  I take blood for tests.  I give you medicine and tell you to take it.  And you do.  But the sickness returns.

At present, one of our team members is petitioning organizations to sponser HIV education and treatment in this area of southern Sudan.  I am hopeful that somehow God will bring HIV education into this area.  As of yet, the area has remained peaceful, but the villagers are worried. 

The morning of my departure from Sudan, I walked through the main village compound alone.  A man came to me with his 8 year old daughter.  I remembered her.  She had tested positive for HIV.  He tried to speak to me and I could not understand.  I tried to turn away gently.  He grabbed my arm roughly and turned me back.  He spoke urgently but without malice.  Another man wandered by.  One of our translators.  The two spoke for a moment and the translator turned to me and spoke: "The man here wants you to take his daughter out of Sudan.  He know she is having sickness and he wants her to have treatment."

I tell you all this because I am haunted.  I am haunted by the face of an eight year old girl whose father begged me to take her away from her home to save her.  I am haunted by the thought that there may be physicians testing people for a disease and then ignoring an epidemic.  Mostly, I am haunted for a people that is war-torn and seeking God's grace - a people that we may not always understand, but need our help on their terms and on their level.

Please be vigilant in your prayer for Southern Sudan; the establishment of independence is only the beginning.  I am confident that somewhere there is a group that has the means to launch the kind of education and treatment campaign that is needed in this area - I hope this blog finds its way to them.

"A missionary friend of mine once said,

'Things were simple before I went to Africa.

I knew what Africa's problem was, and I knew the answer.

When I got there and began to know him as a person,

things were no longer simple,'"

Elisabeth Elliot



Continuity of Care

One thing that Ob/Gyn residency, working as a hospitalist and now working at Tenwek have all had in common is the lack of continuity of care.  I often do surgery on a patient and then never see them again.  It can be nice if the patient is annoying, but some people are very pleasant and I often wonder what happened to them.

Amazingly enough, I have had some "repeat" customers during my missions to Sudan; sometimes previous patients come by just to say hello!  I have discovered that it is actually very nice to have this follow-up and see how peoples' lives have changed one year to another.....

This is a lady that I met last year.  She came to me with complaints of labor pain.  Her two previous deliveries had been stillbirths.  I followed her progress all day and then went to her hut that night (brings a whole new meaning to HOME DELIVERY).  Her labor was very complicated: she had meconium-stained fluid, persistant fetal decelerations and her progress was very slow.  If any operating room had been available, she would have received a C- section.  But that was not an option.  So the entire team sat with her and prayed.  And waited.  And hoped....

When this little guy was finally born - there was never a more happy group!  It was pretty interesting - a bunch of white people and some Sudanese women all cheering together for the same reason. 

And here is the official "newborn" photo with the proud grandma...

Fast forward one year.....

Pretty cute, huh? 



The whole family came back to visit!  Even grandma!  And they decided to name the baby "Richard," after two of  the male doctors on the team.  And check out the little stuffed animal that the lady is holding in the photo above - two of the team members gave the baby that last year!  Mom brought it with her this year, so we would remember her!  Who needs medical records?

Next...

This lady came complaining of labor on the same night as the first patient.  (Welcome to the life of an OB!)  this patient was C R A Z Y!  It was her third baby, but she was not doing well with the whole "pushing" thing.  So, in order to expedite things, I delivered her baby with forceps.

Another healthy boy!



Official "newborn" photo

And here is mom and baby at one year! 

Unfortunately some stories are little more bittersweet...

This is Roda.  The first year I met Roda, she complained that she looked pregnant, but the baby would never come out.  On exam, she had a large (20-22 cm) ovarian mass without any features of malignancy.  I hoped it was a benign tumor, so we took her for surgery in Kenya.  It was benign and she had the tumor removed.

The next year, Roda came to visit me and she was pregnant!  I checked fetal heart tones and talked with her about nutrition.  She was very excited and happy.

This year, Roda returned to see me again.  Her baby was born, but died this past January.  The baby was about 4-5 months old.  I am hoping for a better update next year....

And finally, a story in the making.....

This is a baby that was born during our mission this year.  His mom told me that her last two babies have died within two week of life, despite seeming very healthy at birth.  I took some special precautions with her delivery and made sure she was breastfeeding well, but it's all in God's hand now.  I hope I will see this cute little guy again.....

 

Oh, Baby!

March 13 would have been the quads' due date.  As you recall, they were born at 29 weeks gestation.  Now here are the three surviving babie at nearly 3 months old:

This little gal has had a hard road with some respiratory issues, but - like her brother and sister-
she is a fighter!

Tuesday

1230 am: The pager goes off.  I wasn't sleeping anyway.  Sometimes when I am on call, I can't sleep.  I lay awake and wait for the pager to go off.  And it does.

The patient is pregnant - term with thick meconium and non-reassuring fetal heart tones.  Up the hill I go - primary c-section.

0200 am:  There is a patient with chronic hypertension, now 24 weeks, with blood pressures of 200/150.  Hydralazine and aldomet aren't working.  I take IV labetalol from the operating room (it is not stocked on labor ward) and I sit by her beside and push it IV.  Her pressures finally start to decrease.

0300am: asleep

0700am: Meeting for Physician Staff.  I love chai and mendazis (a fried Kenyan bread).  I don't remember what happened in the meeting.

0900am:  My first surgery of the day is an exploratory laparotomy for a right ovarian tumor (suspected dermoid).  This is per the ultrasound report.  But the patient is not in the operating room.  I go and find her, hang IVFs and take her to the operating room.

1000 am:  It's not an ovarian tumor.  It's miliary TB - all over her abdomen.  What was the mass?  A right psoas abscess.  Luckily, I have a general surgery resident on my service this month, so we closed her belly and then drained her hip abcess.  My first ortho case in Africa!

1100am:  The chronic hypertensive patient is not responding to the labetalol.  Her pressures are high and now she is complaining of a severe headache.  I decide to do a C section.  In the pre-op review, OtherDoc discovers no one has checked fetal heart tones during the 16 hours of her admission.  I do an ultrasound.  The baby is dead and it measures 16-17 weeks. 

I say bad words in three languages.  Then OtherDoc and I do a D&E to empty out the uterus. 

1245pm:  The OR says they are willing to work through lunch.  I try to find the next patient for surgery.  She is sitting on a bench in the labor ward.  She hasn't been prepped for the OR yet.

"Did you want to take her today?" the nurse asks.
I ask OtherDoc to write me a script for Haldol.

We get her to the operating room, but now anesthesia is gone.
I eat two Special K bars during the confusion.
The patient is 61years old and has complete prolapse of her uterus.  Everyone comes in to stare.
Finally, we start and I do my first Le Fort procedure in Africa.

300pm  I am tired.  My feet hurt.  I go to check on labor ward.  I try to make decisions but it is hard. 

430pm  Home at last.  I accidently close the door on Teddy's nose.  He cries.  I give him kitty treats and we go to bed.

630pm Am awoken to the sound of screaming outside my bedroom window.  I look outside.  A lady is sitting on the grass - sure enough  - outside my window.  Her baby is about 3 years old and he is screaming and running around.
I say,"I am sleeping.  Perhaps your baby can go somewhere else and cry?" 

Cranky white doctors.

I wish I had some haldol.

And that was Tuesday.

Adosh

It is called the Secret Shame of Africa.  It robs women of their fertility.  They are thrown out of their family homes, scorned by their family and children.  They are forced to become beggars.  No one will hug or love them. 

No one truly knows how many women in Africa are affected by vesico-vaginal fistulas.  This abnormal connection forms between the bladder/urethra and vagina after an especially long labor.  The labor is typically 3 days in length and the baby often does not survive.  These women - often from very rural areas - do not have anyone to help them during labor and once it is discovered that they are having difficulty with the labor, they have unsafe and poor roads to travel to access care.  Once they reach a medical facility - often hours away - there may not be an obstetrical doctor available, and they will be shuttled to the next facility.

After delivery, they are faced with constant leakage of urine - and sometimes stool.  The foul odors constantly follow them and the acidic urine burns their tender skin.  It is not long until their husbands and families say, "Enough."

The lady above is Adosh.  She lives in Pibor, Southern Sudan.  Four years ago, she was pregnant with her second child.  Her first child was delivered easily.  When she went into labor with her second child, she was not afraid.  But then the baby did not come.  For three days, she labored alone in her hut, with only her mother for comfort.  Still the baby did not come.

On the third day, her mother called for Adosh's husband to take her to a medical clinic.  It was many hours away and the road was not very good.  They had to hitch a ride in the back of a transport truck.  The medical clinic was very poor and the doctor there was not trained in obstetrics.  He discovered that Adosh was fully dilated and the baby was low in the vagina.  So he tried to deliver the baby via an antiquated method involved bilateral mediolateral episiotomies that extended from the hymen/vagina down onto the inner thighs. 

Still the baby could not be delivered.  So the medical officer packed a dressing on the wounds, not repairing them, and sent Adosh and her family to the nearest hospital.  The hospital was in Kenya and was also hours away.

When Adosh reached the hospital, a C section was done.  Her baby was dead.  A hysterectomy was done.  I am not sure why; she did not know about the hysterectomy until I told her.

On her third day post-op, she woke up in a pool of urine.  She could not walk well; she was limping because of nerve damage where the baby's head was entrapped in the  pelvis.  That was the beginning of her secret shame.  She leaked urine continuously.  She was cast out of her home and lived off the graciousness of family.  Her firstborne son and husband were ashamed of her stench and leaking. 

Last year, when I met Adosh she told me that she had prayed to God that He would send her a way to restore her health.  She said she knew that God has sent me to her as a fulfillment of that answered prayer.

No pressure, eh?

Last year, our team worked to send Adosh to the Fistula Hospital in Addis Ababa, Ethiopa.  She had surgery done for her fistula and returned home safely.

Adosh admiring her photo!



Waiting for the transport to Addis - 2010


This year, when I returned to Pibor, Adosh was waiting for me.

She was beautiful!  Her face had a glow that I had never seen on her before.  And she brought her son to meet me - because he is no longer ashamed of her.  Her husband has "restored" her in a house and she is overall doing better.

But she is still leaking some urine.

After three days of trying to get the story from male translators and doing sub-par exams in the blistering heat, I discovered that Adosh appears to still have a small fistula.  Much, much smaller than before, but she still leaks.  So, she will return again to Addis for surgery.

Of all the people I have ever met, Adosh has the most reasons to be depressed and angry.  She has suffered the death of child.  Her uterus was taken from her without her even knowing.  Her family disowned her in a time when she needed them.  She lived in shame and darkness for three years.  She will always walk with a limp because of the nerve injury that occurred.  Yet, even this year she looked at me with a lovely smile and called me her "sister in Christ," and told me that she knows that God did not forget her in that time.

Adosh 2011


There is no word for "love" in Adosh's language.  When I tried to explain to her that I loved her, the translator could not understand.  But Adosh understood.  She said that she knew the thing I wanted to tell her, because I hugged her when no one else would.

Pray for Adosh as she prepares to travel again to Ethiopia; remember the doctors who will be involved in her care.  Pray for her and her family - that their family bonds will continue to be strenthened.  And always, let us pray that God receives all the glory for complete physical and spiritual healing!

For more information on the many girls like Adosh, visit: http://www.fistulafoundation.org/ and learn how you can help change the world, one woman at a time.

Suddenly Sudan

This year celebrated my third foray into the township of Pibor, Sudan.  This was the most difficult year yet as it was HOTHOTHOT! The temperatures ranged from 120-129 degrees F.  Ouch.

It was great to reconnect with familiar team members and meet a few new faces, too.  For those of you who are not familiar with my work in Sudan, I thought maybe it would be proper to first show you the basics....

Getting There:

Since I was already "in the neighborhood," I met up with the other team members in Nairobi.  After a brief respite and reunion, we flew out to Sudan on this private charter plane.  I was a little proud to see that it was owned by my employer.  But then the pride quickly faded when I realized that I would be getting no special "employee perks."  (Thanks Scott!  :-P )

Accomadations:

Once we arrived in Pibor, Sudan, we set up camp at what we have come to lovingly call the "Pibor Hotel." 

There are two room styles in the Pibor Hotel.  There is the "verenda view":

And there is the "nature view."  I always choose this one; it features a beautiful night time view:

My friend, Leigha, and I enjoying our "room" with a view.

All rooms come with a complimentary wake up call.  It is not optional.

The Pibor Hotel also features a bath house (co-ed) where you can take a re-freshing bucket-bath:

On a note of disappointment, last year the bath house featured a rain water collection system that would allow the tomato soup can shower head (in the above pic) to function like a real shower.  However, due to hotel management cut-backs - or something - the tomato soup can shower is out of order and there are no plans to repair it.  So, this year we just took a bucket of water into the bath house and took our baths. Really not so bad.  And I think the water pressure was much better that way.  Though a little sporadic, I suppose.

The Pibor Hotel also features three bathrooms:

However, it is requested that each guest bring their own toilet paper.

The Pibor Hotel offers a Club House for guest use:

We had a belated Christmas Party - my team felt bad about me spending the holidays away from my family and friends back in December, so we decided to celebrate again in Sudan!  We had Santa hats, fake snow and cookies.....

Food/Drink:
Water is of great importance in the heat of southern Sudan.  You have to constantly conscious of the need for hydration.  There is an arabic vendor in the village who will sell bottled water but the Pibor Hotel also has a reliable water filtration system:

For food, we mostly eat non-perishable items that we have brought or MREs (Meals Ready to Eat), which are modelled after what our soldiers eat on the field.  
I survived the week in Sudan on Skittles, jalepeno cheese whiz and crackers and dried fruit.

Dinner Time!

Team Leader, Dr. Fry, enjoying an MRE

Amenities:

The township of Pibor boasts a river - but I don't recommend you swim or drink from it!

There are also nearby shops, or dukas, where one can buy necissities or souvenirs:

If you find yourself unwell - there is an excellent MASH medical clinic nearby...

There is also abundant wild life to see!  Here's so pics of some of the local wild life I've seen over the past 3 years:



But most importantly, there is good company:

Pibor 2011 - Thanks for everything (including letting me steal your pics for this blog!!)