Chapter 20: Dear Nomsa - things that needed to be said.

It’s strange how we want say things to people after they are gone that we couldn’t say to them when they were alive.  I am writing this letter to you, knowing that you will never read it, but knowing that there are things that still need to be said. 

I don’t have the courage to read the letter outloud so I have asked Ian to do it for me.  I hardly had enough courage to write it, but it needed to be written, for me, for Rachel and Leah and for the world.

I have never met anyone like you in my life. I have met people with courage and determination, but you were different. 

If you hadn’t gone and welcomed each new patient who arrived at the TB hospital and sat with them to get to know them, Baby Rahab would be dead today.  What kind of sick and dying person goes from bed to bed of other sick and dying people to encourage them and read scripture to them?  You are the only one that I know of.  I remember the night that Babazile died.  You sat with her until her last breath and then called me in the middle of the night to tell me she had passed.  We cried together.

If it weren’t for your direct intervention, Sepensile would be dead and so would her baby. But it was not okay with you that she was going to die in child birth at the TB Hospital and you made sure that I understood because you knew it woudn’t be okay with me either.  Only because of you, Baby Abigail is with us at the El Roi Baby Home and Sepensile is alive.  

I remember you asking me to bring English bibles for all of the women there and one in siSwati for the lady who couldn’t read English.  Why did you want them? So that you could have a bible study, with a room full of highly infectious women who had no visitors and very little hope for their future.  But you believed that Jesus was their hope, and you were going to make sure they knew that.

I remember you telling me recently that 70% of all the women you met at the TB Hospital had died.  You watched each of them, heard their screams during their night terrors, saw them fall and break bones, smelled them when all human dignity was lost and wept with them when they begged to go and die at home.

I also remember you asking me to bring you goodies.

“What kind of goodies?” I would ask. And you would just giggle and say, “You know what kind of goodies I like. You are my mother.”

Of course if I showed up with the wrong flavor of Oros juice, or if I forgot your Sprite or if the store didn’t have any pork ribs when I was shopping, I was scolded for my inadequacy.  And then we both laughed.

But here is the real truth. I did not like visiting you.  There, I’ve said it.  Not so that you could hear it, but I have spoken the truth.  I was committed to going and seeing you every week that I was in Swaziland, but I hated it.  I hated walking in and seeing women who were skin and bone lifting up their hospital gown to get a needle in their fatless hip.  I hated seeing the dozens of pills sitting beside the unidentifiable food that was required eating so that the pills might be absorbed.  I hated hearing the screams of pain of Sepensile after she fell and broke her femur in two (and her shoulder blade) knowing that Aspirin was the only pain killer available and no other hospital would take her for surgery because of her MDR-TB.   

I hated seeing your weight go down every week and I especially hated the days that I got there and you were having seizures, were not conscious and didn’t know I was there. That happened on your 26^th birthday when Ian and I went to see you. Actually it was the day after your birthday, because I couldn't make it there on February 20^th.  Too bad I hadn’t though because you were okay on that day, but the day after you were not. We left your favorite meat pizza for you, but I think you Isolation roommate may have enjoyed it.

Worst of all, though, was having to leave you there.  I hated going to visit because I hated leaving.  I grew to truly love you, even though I didn’t want to.  At times I was angry at God that He had brought us together because it caused me so much pain to go week after week, and afterall, why should I be feeling this pain?  You are not my biological child.   But our heavenly Father was teaching me.  You are a child of God, and He is the one who told me that you were the daughter of the King, and I must go and stand by your side. 

But there was another part of visiting you that I must also share.  When I would take my last breath of uninfected air, put on my N95 certified mask, strap on the protective shield around my heart and step in to Isolation Room #1 see you, your smile would light up the room, even when you were the most sick.  When I asked how you were doing you always said, “I am fine”.  That always made me laugh.

I loved the day in November that you were able to come to Project Canaan and get a tour in the back of a broken down bakkie with Lori Marschall at your side while I drove.   I loved that you could go in to Chloe’s room and sign her chalkboard with the message, “Hi Chloe, It’s your big sister. I love your room and I love you SO much!”  I loved that you got to eat your first hamburger at our dining room table and it became your favorite food (after pork ribs of course).  Obviously I didn’t fully understand your infectiousness at that time, but the Lord protected me.  

The day we were able to make a plan to move you to Project Canaan was one of the hardest days of my life.  How could I consider bringing someone with XDR-TB to a place where so many people work and live, not to mention my own family, your own babies, women living with HIV and people who would be exposed to your highly infectious disease.  I was wracked with guilt, but at the same time I knew in my heart it was the right thing to do. 

You will never know how many people you impacted in the 52 days that you lived on Project Canaan.  From the women who lived near you, loved you and cared for you to the people who came from the US and Canada and wanted to meet you and tell you that they had been praying for you for many months. You impacted our family at the deepest level and you have left a hole that will never be filled.  Even now I find myself checking my messages to see if I have received an SMS from you, and when there isn’t one, it is then that I remember you are gone… and there is no cellular service in heaven.

I think you knew you were dying they day you called the doctor and asked to go to the hospital.  Your last words to me were, “Janine, even though I am going to the hospital, will you still be my mom?  And will Project Canaan always be my home?” My answer was simply, “Yes.  I will always be your mother and this will always be your home.”  

Thank you Jere for a beautiful message.

Today we remember you with love and admiration and we honor you with our words, our music and our prayers.  We will tell your daughters about your courage, your strength, your feistiness and your faith in a God who never left your side, even to the very end.

Gcebile, I look forward to seeing you again soon.  But for now I mourn your passing.   Matthew 5:4 says, ““Blessed are those who mourn, for they will be comforted.”  I pray for his comfort for all of us today and in the days ahead.  

You are loved.

_______________________________________________________________

The Swazi singing at the funeral was beautiful. We also played two songs that make me think of Nomsa: 

"Stand" by Donnie McClurkin 

https://www.youtube.com/watch?v=RuMLBhrKHsA

"I look to you" by Whitney Houson

https://www.youtube.com/watch?v=5Pze_mdbOK8

Janine

Chapter 19: Nomsa is dead. The rest is history.

Last night Nomsa left this life of pain and suffering. Her work was complete and she went to be with Jesus, no doubt receiving a “well done, good and faithful servant.”   I am posting this blog a day early so that you will all know.  She leaves behind five children including a 7-year old son and two sets of twins. 

I first met Nomsa (her real name is Gcebile Mabuza) on December 13, 2012.  The story is recounted in my blog called wednesdayswithnomsa.blogspot.com.   Her second set of twin girls, Rachel and Leah, live at the toddler home on Project Canaan.  They were born on my birthday, November 19, 2012.  

Nomsa’s struggle with Drug Resistant TB has been a long one, years in fact.  She has lived longer than anyone would have expected.  In the middle of 2013 she put on weight and it looked like she was getting better, but the test results never reflected our hopes and dreams.

In August 2013 she got the news that her resistance to the drugs had increased and, as seen in the “must see” PBS/BBC Documentary film called “TB The Silent Killer,”  Nomsa learned that her MDR-TB had become XDR-TB.  Very few people have survived XDR-TB and with her HIV positive status, the likelihood that she would survive was low, but we still prayed for a miracle.

In April 2014 I was told by the doctor that they almost lost her, but again she rallied and the desire to live kept her alive.  In June 2014 she couldn’t take it any more at the hospital and begged me to take her out so that she could die at “home” – meaning Project Canaan.  And we did.

It was a difficult decision because she was suffering from a deadly and highly infectious disease, but we put precautions in place and brought her in the back of an open truck to the room that had been built for her.  Chloe and Nomsa became very close over the past 18-months and it was so timely to have her home while Chloe was off on summer break.  They got to visit, talk about “boys,” eat snacks together, and Chloe even got to help her choose her clothes, hair and jewelry for her big speech at the opening of the El Rofi Medical Center.  If you haven’t read her speech from that memorable day please go to: http://janinemaxwell.blogspot.com/2014/07/nomsa-addresses-nation-and-her-voice-is.html.

Funnily, she was quite a difficult and demanding patient.  For someone who is so sick and comes from abject poverty, her demands have been high and often unreasonable.  The entire team of caregivers did their best to be patient, gracious and loving through it all.

One day not too long ago, Nomsa's brother dropped off 400 Rand at the front gate for us to give her ($40 US). Up until that point he had never come to visit or care for her, but that day he dropped off cash. It is literally the only cash she had in years, since she had been in the hospital for almost three years. Do you know what she did with it? She quietly tucked it into my hand and asked me to buy Chloe an 18th birthday gift. She had me lean in close to her and she looked me straight in the eye and said, "Janine, it must be something very beautiful. Very beautiful." Can you even imagine that? Needless to say I bought a very beautiful necklace and returned lots of change.

 On a daily basis, Nomsa struggled taking her medication.  She was supposed to take dozens of pills each day and get an injection three times each week.  All day she worked to get the pills down her throat, but she never finished them. Some days she would take the yellow ones and other days she would only get the red ones down. On top of that, she would not eat or rarely ate (unless we brought her “goodies” … KFC or pork ribs).  In addition to that, she was very stressed all day long about taking her pills.  We learned that only four of the pills were actually for her Tuberculosis, the rest were to ward off the side effects of those four pills.  So a week or two ago we had a difficult conversation and she decided to stop taking her pills.  She said, "Janine, the Lord has numbered my days, and only HE knows when I will die.  These pills are not helping me anymore.  Only God can help me."  I supported the decision because it was easy to see that she was not improving by taking them and she was suffering physically and emotionally by taking them.   

On Thursday, August 21^st we had an urgent call to go and visit her.  She was in respiratory distress and was afraid. Ian and I rushed to her side and prayed with her to calm her down.  The next day some new friends from Medecins Sans Frontieres (MSF - Doctors Without Borders) visited to do some further training on dealing with infectious diseases and to counsel us through the days ahead with Nomsa.  They recommended that we take her back to the hospital for her final days as it would potentially be a terrible death and they wanted to spare us the heartbreak, pain and memories of her death.  I was almost sold on the idea until I spoke with the other girls who live at the Sicala Lesisha Kibbutz. When I told them that we might take her back to the hospital, they were shocked and begged me not to. They said, “Janine, she is our sister now and she must die at home.”  I was stunned.  I told them that it could be a terrible death, and did they really want to see that and have their children see it too?  They would never forget it.

They looked at each other and said, “Yes, if we were in our homestead she would die there. Just like our other sisters, brothers, mother and father.  This is our home now and she must stay. If you take her back to the hospital she will think we have abandoned her and that she is not loved.  We will be with her until the end. Please allow her to stay.” 

Wow.  These young women who have come to us through very difficult situations and circumstances took my breath away. They were willing to suffer the pain of watching someone die, so that she would die knowing that she is loved.  I agreed.

I explained this to our MSF friends and they were very moved by this bold and selfless decision.  We then met with Nomsa to discuss what would happen as she became sicker.  My concern was a question of resuscitation, or at what point DO we need to take her to the hospital?  The only hospital that would accept her was the TB Hospital, and I know how much she hates being at that hospital.  So, we had that conversation too with the nurses from MSF.  I asked her under what conditions would she want to be taken back to hospital?  Bleeding?  Pain?  Nomsa was very clear that under no circumstances would she want us to take here there.

On Sunday, August 25^th Nomsa called me and begged me to take her to the TB Hospital. She said she didn’t believe that she was dying, but said when she got there they would put her on a potassium IV, she would get better and come back home.  She could not walk anymore and was in a lot of abdominal pain.  On Monday morning we met and again she begged and pleaded with me to take her to the hospital.  The problem was that I wanted to honor the agreement I made last week with witnesses that I would not take her back.  I tried to buy time by saying that I didn’t have an open-backed vehicle that I could take her in that day.  But she was a determined young woman and called the doctor at the TB Hospital herself, and he sent an ambulance to pick her up.  The decision was taken of my hands, and for that I was thankful.  

When they lifted her up into the back of the ambulance, I immediately recalled the day I first met her. It was December 13, 2012, and she was in the back of the same ambulance heading to the TB Hospital, just as she was this day. Not knowing how infectious her disease was back then, I climbed up into the back of it and gave her a big hug as she handed me her twin girls who were almost a month old.  They had been living and dying with her in her mud hut until someone reported her to the hospital.  I assured her that I would care for them as if they were my own.  The doors were closed and off they drove.

Nomsa lived with us on Project Canaan for the last two and a half months of her life.  As the ambulance drove past the toddler home we brought her twin girls, Rachel and Leah, out to wave to their mom.  It would be the last time they would get to see her alive.

On Tuesday and Wednesday she called frequently to talk, tell me how badly she was feeling, and of course to ask me to bring her “goodies.”  But this time it wasn’t KFC that she wanted, it was her Bible, disposable diapers and anti-diarrhea pills.

Late in the evening on Thursday she took a turn for the worst and the diarrhea was unstoppable. She went into respiratory distress around 10 PM and was given oxygen as well as medication to try to pull her back from deaths door.  At midnight she took her final breath and was gone.

I didn’t know this was happening, but couldn’t sleep that night. I was awake thinking and praying from 2 PM until morning.  At 6:17 AM I got a call from the young woman who was here caring for Nomsa on the farm, telling me that she got a call from one of the cleaners at the TB Hospital to say that Nomsa had died in the night.  I didn’t want to believe her, so I called every doctor and nurse I had phone numbers for to get confirmation.  At 7 AM I heard the news officially.  She was gone. 

No more pain. No more suffering.  No more tears.  No more fear. 

As I reflect on my sleepless night, I realize that I didn’t once think to pray for her.  I prayed for my children, my husband, the babies and Aunties, all of our staff around the world and our long-term volunteers, but not once did I think to pray for her.  Now I know why, there was no need.  She was with Jesus.  And for that I am thankful.

“Blessed are those who mourn, for they will be comforted.”  Matthew 5:4

Janine

PS – We have established a Nomsa Memorial Fund at Heart for Africa.  If her life has touched you as it has touched mine I encourage you to make a contribution and leave a note in the comments box for her twins. All notes will be printed out and put in the girls special keepsakes boxes to read when they are older.  All donations will be used to provide hospital/medical care to Nomsa’s children, and all the children who living on Project Canaan. We will put a plaque in her memory at the El Rofi Medical Centre.  Click here.

Chapter 18: Nomsa moved to Project Canaan - I am not sure if I can do this.

Chloe and I taking Nomsa out of the hospital to the truck.

For those of you who don’t know who Nomsa is you can catch up by reading wednesdayswithnomsa.blogspot.com

Her real name is Gcebile Mabuza, but when I first started blogging about her I called her Nomsa for two reasons; it provided privacy for me to tell her story and it was an easy name for people who were reading the blog.  “Gcebile” has a front tooth cluck to it and can be tricky for the untrained tongue.

On November 19^th, 2012 (my birth day), Nomsa gave birth to her fourth and fifth children at the age of 23 years.  Her girls Rachel and Leah were her second set of twins and in early December she was dying on the floor of her mud hut from MDR-TB (Multiple Drug Resistant Tuberculosis).   She was taken to the TB hospital and I was called and asked if I could take the twins.  The answer was “yes”.  And that is how Nomsa and I met.

In January 2013 I started visiting her once a week to take her food, reading materials and to try to help her get healthy and well so that one day she could care for her own babies and they would not become orphans.  For a year she seemed to get better, gaining weight, taking her medicines and injections daily and helping so many other dying women who needed help in the ward.

In the fall of 2013 she took a turn for the worst.  She had left the hospital to take her medication at home, but got very sick and ended up back at the TB hospital.    One day when Chloe and I were at the hospital visiting we heard the news that we never wanted to hear (but always suspected).  Nomsa had become Extremely Drug Resistant to her Tuberculosis medication (XDR-TB).  This life-altering moment not only changed her life, but it changed ours.  This moment was captured live by film makers Jezz Newman and Beckie Stewart in their incredible film called “TB: Silent Killer - Return of the plague”, which is a PBS/BBC documentary about MDR-TB.  If you have not seen the film, I encourage you to google it or go to www.pbs.com and watch it today. 

Since that day Nomsa’s health has been in decline.  She was moved in to isolation and has watched roommate after roommate succumb to this horrific “plague”, dying in front of her eyes.  Her weight has dropped from 120 lbs to 83 lbs.  She is skin and bones, can’t walk on her own, is in terrible pain and is not always lucid.

In 2013 we built a house for her (a single room) at the kibbutz on Project Canaan with hope that she would one day be “culture negative” (non-infectious) and could move.  That day of “un-infectiousness” does not appear to be on the horizon. In fact, we are told unofficially that only one person in Swaziland has recovered from XDR-TB.  We are still praying for a miracle.

Last week I succumbed, not to the disease, but to her cries to go home.  She had given up hope in the hospital and was failing quickly. The Doctor shared with me that they almost lost her a couple of weeks ago while I was away, but she rallied one more time and stabilized, with more medication.

Last week I could no longer bear her phone calls, begging and tears.  I sought council from friends and experts as to the risks of bringing her here and surprisingly got full support from everyone, including the other women at the Kibbutz and the Aunties at the Children’s Campus.  Everyone said that I MUST go and get her and they would all help care for her.  The Kibbutz ladies would help care for her and her room. The Aunties would send down food three times a day.  People from abroad have offered to pay for her food, get her a cell phone with a radio and come and visit her when they can.  The outpouring has been overwhelming to me.

Nomsa seeing her twins on the way to her house. She couldn't touch them, but saw them.

 She has been here for five days and I now realize this may be the hardest thing I ever do.  Here are a few personal confessions from me.  I am not good with sick people.  I am not good with hospice. I would be a better emergency room worker, but not a long-term care person.  I hate to see people in pain. I avoid watching people suffer.  Nomsa is sick, she is in hospice under my care, she has been in long-term care (hospital for two years), she is in pain and she is suffering.

Janice Johnson with Nomsa in her new bed.

 I have gone to see her each day to count out and put in the correct containers her 36 pills, for her XDR-TB, her HIV/AIDS and her potassium and magnesium deficiency (which has lead to kidney failure).  I (and everyone visiting her) must wear a N95 mask and replace it every week to keep me/us safe when I/we see her.  

The women at the Kibbutz have gone every day to wash her, clean her room, bring her water and try to encourage her. They are simply amazing.

I believe that Nomsa is suffering from depression and some dementia, which is causing unusual conversations and demands (i.e. she only likes white bread, doesn’t like boiled chicken, pizza isn’t real food, and she wants a full time nurse to come and sit with her).  We are all working together to sort this out and help get each of us through this for the weeks or months to come.  Three days a week a government nurse is driven out to the farm to give Nomsa an injection in her hip.  They are committed to doing this every week, but have said that sometimes there is no gas for the vehicle and they don’t always travel when it’s raining. Sigh. We will make a back up plan, because we can, but what about all the other people who will miss out on their injections? 

I will admit, I am really struggling with this.  I feel a huge burden of responsibility and want her to get better, and I do believe in miracles.  But I have to remember that if she is not healed in this life, that we brought her here so that she can die with dignity, surrounded by people who love her.  I need to try to smile when I visit her (though the mask) and not feel sick when I count out her pills.  I need to remember to show her that I love her and not that I am terrified of her death.

Thank you for reading this blog and for your prayers for everyone here.  Please pray for protection for all and grace, joy and HIS peace that passes all understanding.

Janine

Chapter 17: Nomsa got more news

Did you happen to see the PBS Special this past week on Frontline TV called “TB The Silent Killer”?  It is a documentary film about Drug Resistant Tuberculosis and it was filmed here in Swaziland (with Nomsa - real name Gcebile – being one of the patients featured).

The day after the program aired I received an email from our friends Jere and Janet Scott, which read, “Tonight as we watched TV, we watched a program called Frontline on "TB the silent killer".  To our surprise it was about Swaziland.  As we watched we saw many familiar places in Swaziland and were introduced to a number of individuals suffering form TB, DRTV and finally XDRTV patients.  What jumped out was one person, who they called Gcebile in the film, it was however NOMSA, in the film were scenes of her in the hospital, and on the wall behind her were photos of her twins, and guess who else, you and Ian.  I had already recognized her from the pictures of her without a mask.  What a heart rending scene to see when the doctor and nurse came in to tell her that she, Nomsa, had XDRTV and to see her face and the suffering this dear woman is going through.”   

That email made me smile and I was excited to know that people were watching!!

Throughout 2013 my goal was to visit Nomsa each week at the TB hospital.  I would bring her healthy food for her to eat, treats for her to enjoy, books for her to read and letters of encouragement from people around the world.  She started to get up more, go outside, plump up (maybe a high of 120 lbs) and she was active around the hospital.  She had hope.  Because of her heart and actions, we have baby Rahab (mother has since passed away) and baby Abigail (mother had emergency C-Section at private hospital) and of course we have Nomsa’s daughters, Leah and Rachel. 

In the middle of last year she decided to go home and continue on her treatment from her local clinic. We discouraged this, but she felt great and wanted her freedom.  A few short weeks later she got very sick and ended up back at the TB Hospital. Her treatment continued, but she went down hill.  Coincidently, Chloe and I were at the hospital the day that the Doctor told Nomsa that she no longer was being treated for MDR-TB (Multi-drug Resistant Tuberculosis) because she had become Extremely Drug Resistant  (XDR-TB) and that she would be moved in to Isolation Room #1 (highest level of isolation).  The amazing film team was there that same day and captured the devastating news on their camera while Chloe and I stood out of line of camera site and wept.  Later that same day we rushed Abigail’s mother to the hospital and witnessed the C-Section that brought Abigail in to the world (and the tube-tying that assured there would not be a seventh child born to this woman).  That was a tough day!

One of the challenges with Drug Resistant TB here is that there is no laboratory in Swaziland that can test WHICH drugs the patient is resistant to.  So they continue taking ALL of the drugs, some/many of which have terrible side effects such as deafness, psychosis etc.  Our friend from the film production connected us with another organization that was able to send Nomsa’s sputum sample to the Netherlands for testing. It took 4+ long, agonizing months, but I received a call this week that the tests were back.   I headed to the hospital with Lori Marschall on Thursday and met with the Doctor to get the final results.  The Doctor met with Nomsa first and then met with us.

Nomsa weighs only 88lbs (I weighed her myself on Monday of this week).  She is very weak, has trouble speaking without becoming breathless, has no appetite and doesn’t get up anymore.  Walking 30 steps is too much for her, and worse is that she is giving up the fight.  There are days that she tells me she doesn’t want to live. 

Well, God is not finished with her yet.  When we met with the Doctor he told us that her diagnosis is still MDR-TB, with signs of XDR-TB.  That might not seem like a big deal to you, but it is a big deal to her (and me) because it gives us hope. She is NOT resistant to either of the injections available to her.  She had been taken off her daily injection recently because of renal failure.  Assuming she was resistant to it anyway and with her illness they took the risk and removed it.  Now they can work on the renal issue and get her back on those injections. They may be the very thing that saves her young life.  She is also not resistant to another drug that is important, but it does make her vomit violently so we are not sure about that one.

I met Nomsa in early December 2012.   She was rail thin, was sitting in the back of an ambulance holding her twin newborn babies before handing them off to me and taken to the TB hospital.  I will never forget that day.  I am still hopeful that she will be healed, leave the TB hospital on her own two feet and come and live in the house that we have built for her.  It is ready and so are we.

Chapter 16: Nomsa's impact on a 12-year old MDR-TB patient

I have been trying to figure out how to write an update on Nomsa and what happened in the TB hospital last week without the blog being totally overwhelming to me or to you the reader.  It has taken me a week to think it through and if you are reading this then I have had the courage to finish it.  If you don’t know who Nomsa is please go to wednesdayswithnomsa.blogspot.com to find out.

Two weeks ago we hired Nomsa to start making rag rugs because she could do them at her home in isolation (not infecting others), and then would have purpose in life and money to buy food etc.  It seemed like a great plan and Anthony kindly went to her house to teach her how to make the rugs.  One short week later there were no rugs because her hands were hurting and she was having trouble using them properly to tie the cloth on the rugs. Last Saturday she decided to go to church to have people pray for her hands.  (Note: she would be using public transport and be in a public place with XDR-TB – Extremely Drug Resistant TB!).  By the time she got to church she was shaking and having seizures so someone took her to the TB hospital where she still remains.

When she arrived at the hospital she called me and asked me to come visit her. I went the next day with Jimmy and a few men who were on a volunteer trip with Heart for Africa.  The nurse said that Nomsa was in Isolation Room #1 and we were not to go in because she is highly infectious. We all had excellent masks on so went in briefly to let her know we were there and to pray with her.  We did not stay long and did not remove our masks or get to close to Nomsa or the other patient.  She was shaking badly and obviously very sick.

We left her and went to visit a few others in the ward.  Much to my shock and dismay the 12-year old girl who was discharged from the hospital back in July was back in her bed.  This is a long complicated story, but here is the gist.  Her father is dead. Her mother got very sick (HIV/AIDS and MDR-TB – Multiple Drug Resistant TB) and the young girl nursed her mother in their tiny one room house until the mother died last November, at home with the young girl.  Then the girl herself contracted MDR-TB from looking after her mom (the girl is also HIV positive from birth we believe) and was put in the TB Hospital where she spent eight months on treatment.  When it was time for her to be discharged she called ME to come pick her up!  Why? Because her family was dead and mine was the only phone number she had.  UGH.  I could not take her as I have nowhere for her to live, but the nurses contacted her church and made arrangements for her to go live with a family in Mbabane.

Fast track a few weeks and she was back at the hospital. Apparently she was pushed by one of the girls at the home where she was staying and she pushed back (who knows what happened?), but the parents who were caring for her said they would not tolerate that behavior and drove her back to the hospital gate and dropped her off.  Two weeks later she was taken back to the family in Mbabane and then it happened again and they dropped her again at the front gate of the hospital.

The girl was in a catatonic state when I saw her on Sunday. She is not speaking, not recognizing people and clearly has had a psychotic breakdown.  I have spoken with senior people at the hospital to see how we can help and they told me that she is on anti-depressants and drugs for psychosis (which is often caused by the MDR-TB drugs).  I am sure the trauma of losing her mother as well as the trauma of living in the hospital and then the trauma of leaving and then getting dropped back was just too much.

We have contacted people in authority here in Swaziland who we believe can help.  There are meetings happening and we pray that it is not too late.  This young girl, not even yet a teenager, can become re-infected just by being in the women’s ward at the hospital. We pray that doesn’t happen.

The next person we saw was Baby Abigail’s mother who was back in the hospital after having been discharged.  She is totally deaf, but was happy to see us all when we stopped at her bed. She was not able to manage the injections and many drugs at her home and is now back at the hospital getting treatment. I was able to write on a paper and tell her that her baby is doing well.  It is all we could do.

Now, back to Nomsa. I am told that the shaking and seizures were from a bad internal infection.  She seems to be doing a bit better now, but her hearing is almost totally gone (impossible to have a phone conversation and I am not allowed to go visit her in the isolation room).  She is calling me many times a day and is confused.  From asking me if I have DSTV on my phone to telling me she wants to go home, but she can’t walk.    I don’t know if this is the beginning of the end or just another turn in the road.  I am trying to reach health care people at the hospital to get information, but have not yet succeeded.  At this point we just continue to pray for a miracle.  I do believe in those.

Janine

Chapter 15: Nomsa confirmed to have XDR-TB

 

This blog has two stories.  One is about Nomsa’s health status at the TB Hospital.  The other is about a pregnant woman, also at the TB Hospital.  I will give more detail about the pregnant woman in this blog and then give a detailed report about Nomsa on my Wednesday blog (wednesdayswithnomsa.blogspot.com).

Thursday night Nomsa sent me a text message telling me that she had run away from the hospital after a nurse (who should be fired) left her a note on her bed giving her the “heads up” that her most recent SMEAR test had come back positive and she would be moved in to isolation the next day.  Nomsa ran and then asked me to forgive her.  It was a long complicated night, but with help from friends who shall remain anonymous we were able to find her in Manzini, get her back to the TB Hospital and sneak her back in to the ward with the promise that I would come in the morning and discuss it all with her.

Doctors making rounds at TB Hospital

 The morning came and Chloe and I headed to the hospital.  When we arrived we learned that the Doctors were going to meet with Nomsa and tell her that she was no longer responding to the Multi-Drug Resistant Tuberculosis (MDR-TB) and that they now wanted to start treating her for Extremely Drug Resistant Tuberculosis (XDR-TB) and they would immediately move her into an isolation room with one other patient so that she did not infect any of the MDR-TB patients with XDR-TB.  There is a documentary being filmed about MDR-TB and so the filmmakers were there to capture this awful moment (their intention is to bring awareness to the issue and hopefully drug companies can help with better treatments in third world countries).  The message of XDR-TB is equal to being given a death sentence, and Nomsa knew it. She is a smart girl and asks questions so she knows that no one has recovered from XDR-TB in Swaziland, ever.  The news was devastating, the silence was earth shaking and her tears were heart wrenching.

Nomsa is being told she has XDR-TB.  BBC/PBS filming.

On the other side of the half wall lay another MDR-TB patient who was pregnant.  She is bone thin with a small baby bump showing the world that she was carrying a child.  She is also HIV positive and very very weak.  Her CD4 count (for those who know that is) is between 129-230.  After delivering Nomsa’s news the Doctor moved on to finish her rounds in the ward.  She found the woman in distress and suspected that she was in full labor. The baby was only 34 weeks old, but an emergency C-Section would need to be done to save both mother and child.  There is no labor and delivery facility at that hospital so other plans had to be made and made quickly.

Thankfully the woman was in false labor just one week ago and that prompted me to try to help find a hospital that would admit and care for an MDR-TB patient.  The disease is highly infectious so it would require full isolation as well as total fumigation of the Operating Room with no use of it for 24-hours.  The C-Section would have to be perfectly timed on a Friday afternoon after all other C-Sections are completed and the room can rest for the weekend.  I am thankful to say that the private Women and Children’s Hospital (WCH), where Benjamin was treated for his burn and where Helen Muli had her baby last Friday, said “yes” and agreed to help us.

Unfortunately the OBGYN at the WCH died suddenly and unexpectedly a few short weeks ago and the Doctor who was filling in for her lost her brother suddenly last Friday so there was a “hole” in the communication process when we tried to contact WCH.  I will say that Sister Patience (who likely will never read this blog) was amazing and stepped right in to help bring order to confusion and prepare for this special patient.  Then there was the transportation problem.

The TB Hospital did not have a way to transport the woman in labor to WCH.  WCH had an ambulance, but it was heading to Mbabane (the opposite direction).  The labor pains were intensifying and the woman was 4cm dilated.  Sister Patience asked if I had a car and could just bring her.  Well, yes, I guess, but she is in labor and has MDR-TB … but what was the alternative?  Chloe and I went back to the hospital and helped her out of bed.  Took her hospital gown off and put clothes on her rake thin body.  Helped her down the stairs. Put a mask on her (we already had masks on) went back and got a blanket for her along with her cell phone and the nurses handed me her MDR-TB medications (syringes for her daily injections and 22 pills per day) along with her HIV Anti-Retroviral tablets.  Surreal.

MDR-TB patient in labor in our car.

As I was driving away with windows open for natural ventilation and CDC masks on I suddenly wondered about liability?  Patient confidentiality?  Family input and a thousand other things.  Last week when we formulated the plan for us to take her to a private hospital I did speak with the woman’s brother to get his consent.  He was so happy that we wanted to help and asked if we could also take the baby when it was born as he was already caring for three of her children?  I said we would discuss that after the baby arrived with Social Welfare involved.  So as Chloe and I drove the woman and her labor pains were intensifying I thought it best to call her brother again.  Thankfully he was still happy that we were helping and gave his consent.  In fact, only an hour later he also gave the nurses consent to do a tubal ligation during surgery to prevent any further pregnancies for this woman.

MDR-TB patient in isolation at private hospital.

At  4:55PM a beautiful little baby girl was born.  I was thankful to be in the Operating Room for the surgery, but it was eerie to see a beautiful life come out of something that looked like a corpse.  I don’t mean to be unkind or critical, but that is what it looked like. Even Sister Patience commented on how such a perfect new life could come from “that shell”.  The baby was 2KG (4.8 lbs), breathing on her own and looks perfect. 

Welcome baby girl (unnamed).  2KG and healthy.

I requested that the baby not be taken to the mother for two reasons. First, the baby must not be exposed to MDR-TB if possible. Second, the mother is HIV positive so if we can avoid breastfeeding that would be best.  But the real question is if the mother will take the baby home or if she will come to us. If the baby goes home with her (well, with the family because the mother will go back to the TB Hospital) then they can decide how the baby is fed.  If she comes to the El Roi Baby Home then she will enjoy a formula diet.

As Chloe and I drove home at 6PM I received a call from an unknown number.  It was the Grandmother to the new baby girl.  I had texted the good news to the brother and he had called her. She was so happy to hear that both mother and baby were well (technically we aren’t sure about mother yet, but the surgery went well).  She requested a meeting with me today at noon at the hospital.  I am hoping that we will meet and that she will take the baby girl home to be raised within the family, but I suspect that will not be the case.  I will post an update on this blog after the meeting.

God’s timing is always perfect. If Nomsa had not run away on Thursday night I would not have been at the hospital to hear the news with her about her XDR-TB status. If I had not been there I may not have been notified that the woman was in labor.  The Lord had Nomsa there for a specific purpose in that woman and baby’s lives and HE kept her there until His work was complete.  I stand in awe of an awesome God who sees everything and wastes nothing.

Janine

Update:  On Saturday I went to the hospital and met with the woman who I was told was the Gogo (Grandmother). In fact, she wasn't the Gogo, she was the wife of the oldest brother of the mother of the baby.  Why wasn't the Gogo there?  Because she was drunk.  According to the family this happens by 9AM each morning so by the time we met at noon there was no speaking to her.   The mother of the baby named the baby "Surprise" because she said she didn't know she was pregnant until 6 weeks ago in the hospital.  Well, "Surprise" is now at the El Roi Baby home and while we will always have her given name as a part of her life, we will nickname her Abigail.   We are thankful.

Chapter 14: She ran away, and then came back a month later.

Rachel and Leah are 10-months old

This month has not been easy.  I left to take Chloe to school in Taiwan and Nomsa ran away from the hospital. Well, technically she was given a five-day pass and then decided not to return. She was lonely, hurting, very afraid and needed time alone to think.

Nomsa asked me what she should do? Should she start the treatment for XDR-TB* (she doesn’t know that only one person has been cured of XDR-TB in Swaziland through treatment)?  How much would she suffer with the side effects of another layer of medication?  Would she be better to go home and die alone?  How long would that take?  Her questions were heart wrenching and not having an answer for any of them was even worse.  I am a problem solver, but I can’t solve this problem.

Here were her options: 

1.              Stay at the TB Hospital in an isolated room and begin a minimum of 8-month new treatment regime (see photo of one months supply including daily injections), suffer from new side effects and a high likelihood of losing her mind while she watches others die through the tiny window of her door.

2.              Leave TB Hosptial and go to her homestead where there are no people, no food, no electricity and no clean water.  A nurse would have to come and give her the daily injection, but without any food her body would succumb to the medications themselves.

3.              Pretend she is fine, go back to a life of prostitution and infect an infinite number of people with XDR-TB and HIV/AIDS.

Nomsa spent the last month praying, thinking, reading her bible, and praying some more.  She asked me again and again what she should do?  What could I say?  I can’t begin to put myself in her shoes and really understand what she was/is going though.  By staying away from the hospital she had effectively made the decision to not take her TB treatment and that effectively was a death sentence. But wasn’t taking the medication in the hospital almost also certain death?

Last week she contacted me and said she was going back to the hospital. If they would agree to treat her at home, she would start treatment again.  If not, she would not return to the hospital to stay and take the treatment.  We met up outside the pharmacy and I helped her pack eleven boxes of pills and a huge box of injections in to her large purse.  These would last her a month and then she would return for the next prescription refill.

Nomsa's new cocktail - one months supply.

The really sad part is that the Doctors have no way of telling Nomsa WHICH of the drugs she is actually resistant to.  Sadly the government is lacking the funds to pay its bill at the facility in South Africa that reads those results. Fortunately for Nomsa she/we have a mutual friend who has a friend who can help us get her test results.  I had her go to a different clinic in Manzini and she gave them a Sputum sample on Monday of this week.  They are sending it to Belgium for free (as a personal favor to my friend) and we will know in 8 weeks which of the drugs she is resistant to (or if she is resistant to them all, which is a strong possibility).  For now, we have 8 more weeks to pray.

On Tuesday Nomsa called me and said that the government had just run out of funds to provide health care workers to go in to the community to give the injections to TB patients.  She was distraught because without that person giving her the injection and without that part of the treatment she would not be able to continue it all.  Later that day she was offered a room at her Uncle’s house so that she can live there and go to a local clinic for her daily injection.  She was happy again.

I am not going to lie here … I am highly suspect of this “Uncle” who didn’t care about her before, but now that she looks and feels healthy (and she is a beautiful young woman).  Nomsa assures me he is a “man of God”, but I pray for her safety if she goes to live there.

I just called her on the phone so that I could give you all an up-to-the-minute update and she said that the Uncle has told her to “hold” on moving as he doesn’t have a room ready yet.  She also said that a man showed up unexpectedly at her homestead today and gave her a very large bag of mealie meal (ground maize) and some soup stock (dried for flavoring the maize).  She was astounded and thankful for the provision of food.    You and I are likely thinking the same thing … who is this “good Samaritan” and what does he want?  I have no answer for that.

That is my report for this week.  If you are confused, it is because it is confusing.  If you are heart broken, it is because this is heart breaking. If you are called to pray more for Nomsa than ever before, it is because you are called to pray. Remember, Nomsa represents thousands/millions of women in Swaziland and other parts of Africa and the world who are living with and dying of TB and HIV.

Let us pray together.

Janine

*XDR-TB is Extremely Drug Resistant Tuberculosis