Tuberculosis at the baby home

Someone mentioned to me that my blogs are getting very heavy.  Each time they read them they feel my pain and sometimes they are just too much to read.  They wondered if many people might stop reading my weekly blog because of I am just making them too sad.   I hope that isn’t the case.  The Swazi people can’t just stop being hungry or sick because it makes them too sad, so I pray that you will continue to read, learn, pray and engage.  We are in a crisis that is only getting worse every day.

It’s winter here, which means its around 45F at night and 70F+ during the day, but we are all cold.  There is a darkness over the country right now that is not allowing light or warmth in to our bones or our lives.    We see fear in the eyes of our people, and it is heartbreaking.  Tears flow freely and there is not a day that I don’t shed more than my share.

As if the worst drought in recorded history wasn’t enough and starvation in every community around the country, we are starting to see the impact that hunger has on sickness.  When people are on anti-retrovirals for HIV/AIDS they must eat properly (including protein) for the medication to work.  They have no food.  As treatment starts to fail, there is an increase in opportunistic infections and diseases … like Tuberculosis.

This past week we learned that several of our Aunties, who live in the baby home and toddler home, tested positive for Tuberculosis.  We do not know yet whether it is drug-resistant or even multiple-drug resistant, but we pray that it is not.  They have been removed from the home for now, but not before they had the chance of infecting other caregivers and children.

Here is the thing.  Anyone and everyone who has been living in Swaziland has been exposed to TB.  They don’t even do the skin test in Swaziland that would show if a person had been exposed because we have all been exposed.  Having a health immune system helps the monster from getting in to our lungs or other organs.

This week I saw fear in the eyes of my own Supervisors as they wondered if they too had contracted this deadly disease.  Some people have active TB (obvious with coughing, weight loss and night sweats), but some have inactive TB.  A sputum test and/or chest X-Ray is how diagnosis is done here, but to make things worse, if a person is HIV positive, it is quite possible for them to have a negative sputum test (even when they have active TB) because their immune system is masking the TB.  A nightmare situation.

On Monday we will start testing the women and children who were most exposed to the infected Aunties.  Because it is impossible to get sputum from an infant, we will do an expensive blood test on everyone (including me) to see what our infection level is.  We pray that we have caught this beast before it has unleashed hell on our Children’s Campus, but even if we have, the battle is not over. 

Meanwhile we are taking further action in the three Chiefdoms surrounding us o see how we can help those in desperate need.  We have assigned a full time Community Support person to go out in the community and assess the situation, starting with the elderly and the orphan headed households.  We will start delivering food and helping where we can, as we can, next week, and this will be in partnership with the local Chiefs and the Community Health Motivators (see last week’s blog).

We have set up an account for Community Support.  If you would like to help us help those in need, please give generously today at this link.  If you would like to help us with the cost of the TB GOLD tests (approximately $36 US each) please click here. 

Links for Canadian donors are:  Community Support  and Emergency Medical Fund.

Thanks for your prayers for all concerned. I will provide an update on the test results in next week’s blog.

Live from Swaziland … praying for health and strength and His provision.

Janine

Nomsa has moved to Project Canaan – Not sure 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.

Live from Swaziland … some days are better than others.

Janine

One baby to hospital, one baby’s legs amputated, one unborn baby at high risk.

 

This was a tough week. Within the past 24 hours we correctly diagnosed a 9-month old baby in the rural community who was severely malnourished with Kwashiorkor and got her and her mother to the hospital days before she would have died (according to the doctors).  Last year this same mother lost a child to malnutrition after spending SIX WEEKS in the hospital. They had arrived to late. 

Next we met another 9-month old baby who “somehow” was found in the middle of a cooking fire and whose legs were burned so badly that they had to be amputated.  The baby had been discharged on April 16^th and still had large 3^rd degree burns exposed.  They had been told to keep the wound open so that it would heal. Based on my learning from Benjamin’s burns I knew that the skin would never grow back and he would need skin grafts. In addition the wounds were infected and they had no antibiotics or even bandages.  We were able to get him to the hospital and directly to a surgeon who cleaned up the wounds, treated with antibiotics and scheduled a meeting in two weeks to discuss skin grafting. Total cost to help that day was $6 USD.

But neither of those situations were what really sucker punched me. It was the 9-month* pregnant woman who is dying of Multi-Drug Resistant Tuberclosis in the hospital and was believed to be in labor.

When I dropped in to see Nomsa on Wednesday she told me about this woman’s tragic situation and we tried to speak with the woman to encourage her, but she is totally deaf now from the TB treatment.  She is bone thin from extreme weight loss and her eyes were sunken back in her head.  She would slowly reach out her hand to ask for help, and would shout out as she couldn’t hear the volume of her own slurred words.  After praying with her we left and went on our way.  The next day I stopped in to see how she was doing on a “nudge”, only to find that Nomsa was convinced the woman was in labor. She had a urinary tract infection, which I am told can bring on labor.  An ultrasound suggested that she was 36 weeks pregnant, but to the naked eye looks like she is 6-months pregnant and hardly showing. 

This is a long, long story that I will cut short for Saturday morning purposes.  After voicing my concern to other patients and our volunteers (not helpful) I went to the nurses and asked specific questions about how and where the woman would give birth.  The nurses told me that she can’t give birth naturally because childbirth would like be the death of the mother, and possibly unborn child.  She would need a Cesarean Section.  I asked where that would be performed (believing she was in labor at that moment) and the nurse said she did not know.  No plans had been confirmed at that time, but she did know of several local hospitals who had explicitly said that they would not allow the woman to enter the hospital for fear that she would spread the horrific disease that she was living/dying with. 

MDR-TB is highly infectious and highly deadly, especially for people who are HIV positive and whose immunity is already compromised. With an estimated 46% HIV rate in the country some hospitals have chosen to not have any MDR-TB patients admitted to their hospitals. But then what?  Where would she go?  The nurse didn’t know and were clearly uncomfortable that I was asking (pushing). They assured me that when the time come that the doctors would have a plan, but I suggested that the time might come at 2AM and with no plan in place now, both mother and child would die.

I am not putting thoughts in their minds, but I wonder if they were thinking that might be the best option for both mother and child? The mother is likely to die from this terrible disease and if the baby lived it would be pawned off to an unhappy family member who is already looking after her other three children.  They would have one less patient in misery and the world has one less orphan?

Well, I don’t think that way, but they were clearly stuck.  Finding a hospital to take this woman to was way above their pay grade, responsibility and skill set so they were stuck.  I pulled out my phone and called an OBGYN at the Women and Children’s Hospital who had cared so wonderfully for Benjamin and his burn care as well as the inducement of Baby Daniel’s mother.  They are arguably the best (or in the top two) private hospitals in the country.  I explained the whole situation and she after I had finished there was a long pause, and then she said, “WOW!”. 

Yes, wow.  What do we do? I am not going to lie, knowing that the doctor I called was pregnant (and was also Helen Muli’s OBGYN) was part of my hope that she would have extra compassion. After more pause she said that she would go and speak with the Chief Medical Officer and call me back.  And she did.  Only 20 minutes later she called and said they would do it! (!!).  There were criteria that we would need to work with because they would need to fumigate the surgical room and let it sit for 24-hours after the surgery before it could be used again (i.e. over the weekend) and then they would provide her with an isolation room for three days before she was transferred back to the TB hospital. I really couldn't’ believe my ears. 

The next day I called the Chief Medical Officer at the TB Hospital and gently introduced myself and tried to explain the situation without suggesting that they did not have the situation totally in control, but I did say that IF we could help and IF our help was needed that we were willing and able. Note here that I did not have funding for this (likely $2,500+ USD), but I believed that if this was what the Lord wanted then He would provide the funds.  The Doctor thanked me for my call and said he would look into the situation.  By the end of the day he called back and said that he had personally gone to examine the patient and they believed that she was not in active labor. He assured me that they did have a care plan in place, but they believed that our offer was a much better solution and would provide a better chance of both the mother and the baby living.  He thanked me again for stepping out and taking the risk of helping and that he would like me to connect him to the people at WCH to make a plan.  Within an hour of that call the hospitals had spoken, and OBGYN was assigned to go to the TB Hospital to examine the patient and a plan would be made for delivery.

I want to mention here that I/we in no way were doing this or involved in order to receive her baby at El Roi. That never entered my mind because I believed (or chose to believe) that she had family that was ready to take the baby.  When we contacted her brother to get consent to move her to a different hospital for child birth he thanked us, fully consented and then asked if there was some way we could keep the child?  It was then that he told us he was caring for her first three children.  We will cross that bridge when we get there, but for now I believe that this young woman has a chance at life, and so does her unborn, innocent child. 

I woke up this morning at 3AM and had a message from a dear friend in the US. She asked what the cost of the C-section and hospital stay would cost? I told her I was guessing $2,500.  She has offered to pay the hospital bill.

El Roi sees us all.  He is our provider and our protector. I am so thankful that Nomsa is a patient at the TB Hospital because God is using her in a MIGHTY way. It is not a place I would want to live, and nor does she, but she does see that HE is using her and she has days were she is less hopeless because of that knowledge.

Live from Swaziland … I love when educated and powerful people work together to help others.

Janine

PS – on a very happy note I am thrilled to tell you that Helen and Peter Muli have a brand new baby girl!  Her name is Rosylen Muthikwa and she weighed 3.5 KG.  Mother and baby are doing well.  Her OBGYN missed out on the delivery due to the unexpected death of her brother, but she made the TB/C-section situation happen before she left for home.  Thankful.

*I do find it a strange coincidence that all three stories above with “9-months” old including the pregnancy.

Good news and bad news.

Baby Nathan arrives at El Roi.

First the good news. Yesterday Baby #24 arrived quite unexpectedly while I was in town with Chloe running errands and preparing for our trip last week. The Grandmother of the baby brought him for help because the mother is not doing well physically and couldn't travel. We will go and check on her today. Thankfully I had an emergency diaper bag in the back of my car, packed with love by Lori Marschall for "such a time as this".  Baby Nathan was born on January 5, 2013 and he is now home at El Roi.  That's the good news.

Now for the bad news.

This past month I have learned four very bad words:  Multi-drug Resistant Tuberculosis (MDR TB).  Maybe it’s only three words, but they are words that I had never heard in my whole life until I met the young woman whom I will call “Nomsa” – the mother of our twin girls Leah and Rachel.

If you read my blog dated December 15^th you will remember how I met this young woman.  It was a desperate and heartbreaking meeting as she handed her precious 3-week old babies to me from the back of an ambulance and then tried to be brave through her TB mask while tears of sorrow and regret poured out of her eyes.  I didn’t think I would see her again because she was going to the National TB hospital to die.  She borrowed a cell phone at the hospital and called me that same night to see how her babies were doing. I immediately liked her and thought that I should plan to visit her in the New Year. My visits have now become a weekly event and usually the high point and the low point of my week.

Nomsa has Multi-drug Resistant Tuberculosis and is “co-infected” with HIV.   She is very very sick and has a long and difficult road ahead if she is to live.

When I first went to see Nomsa I had to find my way to the TB hospital. I had never been to (or heard of) this place, but it was easy to find.  It is a huge, multi-building facility that was built in 2009 to provide a safe place to treat this highly infectious disease away from the general population.  The buildings are well maintained, very open (lots of ventilation) and sterile, as one might expect. 

There is a guard at the front gate (not sure if he is to keep people in or out) and once you pass him you move on past the mortuary sitting prominently near the entrance (also with a guard outside - ??).  Just down from the Mortuary is the Women’s Ward.  After you enter, you put on a paper mask and then find your way to the patient you are seeing.

The first time I visited Nomsa there were ten women in the ward with her.  She is 24-years old and most of them were around the same age, except for the 12-year old who was the youngest one there.  Each of these women are in for very aggressive treatment which includes 18 pills at 10 AM every day followed by a very painful injection in the hip.  They get 4 more pills at 10 PM and those are there MDR-TB medication.  All of the patients are “co-infected” so they are all HIV positive and are automatically put on Anti-retroviral medication as soon as they arrive IF they are stable enough to endure it.

This treatment is done for a MINIMUM of six months and can last up to two years.  The treatment has terrible side effects including daily violent vomiting, total hearing loss and psychosis.  While we all read the possible side effects of various medications that we take, we rarely see those side effects manifest themselves.  In this case, many (maybe even most) have the side effects of these drugs.  It seems that they all spend time vomiting after their meds.  Of the ten women in the ward on my first day, half of them were totally deaf and my friend Nomsa has ringing in her ears after only a month of treatment.  Of the ten women in the ward, four of them had extreme psychosis and would yell out for help, talk to invisible people, crawl around naked on the floor or urinate on the floor in front of you

I have been to the hospital to visit Nomsa six times in the past month and I have not yet seen one other person visiting in the ward.  I have seen the odd person standing outside, distant from the patients so as not to catch anything. (It reminded me of the scene in the Valley of the Lepers in the movie “Ben Hur” when people would hide behind rocks and peek at their loved ones from afar too afraid to go near.  I can’t say I blame them).  Inside the ward there is no radio, no tv, no books, no sound, no calendar to mark the day, no color and a lot of death.  But it is clean, appears to be professionally run and is clearly the only hope these patients have of survival.

On Friday I stopped in for a quick visit and to let her know that I would be away for the next two weeks traveling.  I took her some much needed protein and prayed that she would be alive when I returned.  MDR-TB patients who are also HIV positive can take a bad turn and die in a matter of weeks.  In fact of the ten patients who were there at the beginning of the month, five of them have died.

On Wednesday my friend Wendy was here from the US volunteering to distribute TOMS Shoes and help out at the El Roi baby home.  We had to take Leah and Rachel in to be tested to see if they contracted MDR-TB so Wendy agreed to go in and spend some time visiting/ministering to/encouraging Nomsa while we took the babies to be x-rayed.  The twins test was negative so we believe they do not have TB and now can come out of the isolation room at the El Roi Baby home and join the rest of the family.

Nomsa looking at her twins from a distance.  A very moving and difficult moment.

When we went back to pick Wendy up I took my usual walk around the ward to visit and encourage some of the women there.  There was one woman who had been very sick the past few weeks. She was just skin and bones and lay naked with her boney arm stretching out to us for help. Her eyes were stretched open wide and white as snow.  She cried out to us and said, “Help me!  I am dying!”  It was a horrific plea from a woman who had no hope left in life. We held her hand, rubbed her arm and tried to comfort her with words that seemed empty, but Nomsa reminded us that the woman was totally deaf from the treatment and couldn’t hear us. We had large protective masks on so she couldn’t see us smile or read our lips as we prayed wit her.  We all tried to smile with our eyes and prayed to God to help her.  When I returned yesterday, she too had died.  Nomsa said when the time came for the woman to pass away she started wailing and screaming.  Nomsa said it was terrifying, and then she was silent.  It was over.

While my heart ached for Nomsa and the other women in the ward who have now seen six women die horrific deaths in the past month, I can’t even begin to imagine how the 12-year old girl is processing and surviving this all.  Please pray for her and the others who are fighting for their lives.

We had the great privilege of meeting one of the founding Doctors at this hospital. He was more than helpful, informative, educative and very willing to help us in any way that he possibly could.  I look forward to continue learning from this man as we continue on this journey together.

As I was waking up a few mornings ago I had a random thought float through my head.  I recalled the book “Tuesday’s with Morrie” and wondered if Nomsa might be willing to allow me write a blog called “Wednesday’s with Nomsa”.  To me, Nomsa represents the women of Swaziland.  She has lived in poverty, but had hopes and dreams. She found love and then lost it. She had babies, and then had to give them away. She was a vibrant, smart, educated young woman and then became infected with HIV due to choices that she made or were made for her.  There are so many layers to the social situations happening here in Swaziland that maybe we could peel back many of them and take a peak inside through this one bright young woman. 

I have asked her if she would allow me to sit with her every second Wednesday and write her story.  She is thinking about it while I travel. I hope that you, the reader, might be interested in doing a little more reading every other week and go with Nomsa and I on this journey.  It won’t be pretty, but hopefully will be insightful.

On Tuesday Chloe and I will get on a plane and head to Asia for two weeks. We will spend several days in Taiwan visiting the Morrison Academy where Chloe will attend school in August. Then we will head to Japan to officially launch HEART FOR AFRICA –JAPAN. I look forward to sharing all that God has done and is doing in Swaziland with our friends in Asia, but I will be happy to get back home to visit my friend Nomsa again.  Please join me in praying for health and safety as we go our different direction this week.

Live from Swaziland … pondering life.

Janine