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

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

My heart hurts for the women of Swaziland

My beautiful family

Happy New Year from the Maxwell family at Project Canaan, Swaziland!   I am incredibly thankful for my beautiful family being together over the Christmas holidays.  May the year 2013 bring you joy, peace and love.

______________________________________________________________

Some of you have asked me privately what I struggle with and/or how you can pray for me?  My first answer is usually asking for prayer for El Roi funding so that we never have to turn away a baby in need.  But today I have a different request based on several women I spent time with this week. 

Being a girl or a woman in Africa is very hard.  Females are not valued as males are valued, but they are the backbone of most African cultures and societies.  I remember reading a statistic that 75% of all food that is planted, grown, harvested, prepared and put on the table to eat on the whole continent of Africa is done by women.  Women are beasts of burden and are also responsible for fetching water (many miles away), giving birth, raising children and providing love and care for the entire extended family. In Swaziland and the woman is also responsible for building the home that the family lives in (typically made from sticks, rock, mud and grass).  Their bodies are not their own (often used by male family members) and their real value is in the number of cattle or goats they are “worth” when it comes time for “lobola” to be paid for their hand in marriage.

I have met several young women in the past few months who have really impressed me, even through the tragic situations that brought us together.  They seem to want to break the cycle of poverty, but it is virtually impossible to do in a country that doesn’t value women, has an unemployment rate of 70% and where sex is the easiest and quickest way to provide food for your children (or yourself).  

I am really struggling with this because I want to help these young women, but don’t know how to do it and don’t have the funding to do it at this time.  Let me tell you a short version of three stories from this week. Some of these you may be familiar with if you are a regular blog reader.

Woman #1 – She is 30-years old, has 8 children, is HIV positive and has been in the woman’s prison multiple times over the years because she steals food to feed her children.  She is now in prison for three more years.  Her youngest ones (age eight months and the other is two years) are living in prison with her.  The next five (ages eleven years to three years) are living alone with no food, no clothing, no adult care.  We have been working with police, Social Welfare and the Correctional facility for seven months to try to get assistance for the little baby in the prison and the young ones living alone.  This continues to seem like a hopeless situation, but we haven’t given up hope yet.  While we are trying to provide a medium-term solution for her children’s care while she is incarcerated, the question remains how she will be able to care for them when she is released in 2015?  She would like to live and work at Project Canaan, but we have no housing or facilities for her at this time.

Baby Hope

Woman #2 – She is 26-years old and is the mother of two-year old twin boys.  She was violently raped in 2012 and after several failed attempts at aborting the child she recently gave birth to a beautiful girl, who now lives at the El Roi baby home.  She is a hard worker (she cleans at a local factory) and tries to provide the best care she can for her twins on her $100 US per month salary.  She recently discovered that her boys are being neglected (to say the least) by the woman caring for them while the mother works 12-hour shifts.  She would love to come and live at Project Canaan and work on the farm or in the baby home, but we have nowhere for her to live and no one to care for her twin boys. Her own parents kicked her out of the homestead when they heard she had been raped because they didn’t believe her story and believed she was just being promiscuous.  The father of the twins is unemployed and refuses to help with the boys.  She is stuck.  And I am stuck because I want to hire her, but I have nowhere for her to live with her little ones.

Leah and Rachel

Woman #3 – She is 24-years old, is HIV positive and has active Tuberculosis. She has given birth to five children - one single birth, a set of girl twins and another set of twin girls on November 19^th (which just happens to be my birthday).  The first three children are being raised by their fathers parents.  The new twins live at El Roi and were brought to us by the Social Welfare department when the young mother was being taken to the National TB (Tuberculosis) hospital.  She is deathly ill and could not begin to care for her newborn babies in her mud room home.  She has what is called DR-TB – Drug Resistant Tuberculosis and is a sanitarium that is designed for acute cases of this highly infectious killer.  Each day she gets 18 pills at 10AM as well as an injection in her boney hip.  At 10PM she gets four more pills.  When I asked how she got in to this situation her simple reply is “bad behavior – and it will not happen again.”   IF she responds well to this treatment and IF she lives she will reside at this TB Hospital for the next six months to two years. Each and every day she will receive the 22 pills and injection in order to save her life.  She was quick to tell me that she is trusting in the healing power of Jesus more than she is trusting in the medicine, which makes her vomit violently and often results in long term effects like loss of speech or psychosis.  If and when she gets well, she wants to come and live at Project Canaan and learn to make jewelry and sew.  But right now we have nowhere for her to live when she is health again.

All three of these women have become my friends.  I visit them as often as I can and think of them and pray for them daily. But each day my heart gets heavier and heavier for them.  They remain hopeful about their futures, while I stand in awe of their hopefulness.  My hearts desire is to be able to help these girls/women just as we can help their babies.  I know we can’t “save them all”, but maybe we can help the one who is right in front of our eyes; the one who look through the prison bars and ask for help to save her children’s lives, the one who stands against a mud wall and shares her fear about her babies being abused by a caregiver while she works, the one who looks over her Tuberculosis mask and thanks you for caring for her twins.  

Next week I will blog about my visit to the National Tuberculosis hospital.  It was a shocking and life-changing experience for me and I want to do some research before I write next week so that I can best articulate what I saw and what is happening here in Swaziland with AIDS and TB.

Please join me in praying for these three women and all the others of millions of women who are suffering every day.  May the God Who Sees us all provide His hand of protection and provision as only He can do. 

Live from Swaziland … my heart is hurting.

Janine

One Mother throws baby out of moving car, another Mother dying of TB gives away her twins

On Tuesday a little baby girl (approximately 4-weeks old) was found lying on the floor of an apartment building in Manzini.  On Wednesday an 18-year old mother decided to throw her baby out of the window of a moving vehicle rather than keep him.  On Thursday I was given a set of 3-week old twins out of the back of an ambulance on the side of the road (literally on the side of the road).  What is going on here!?

I will admit that when I started hearing stories of “baby dumping” a few years ago there was a part of me that just didn’t want to believe it.  The stories in the newspaper just couldn’t be true.  These must be very isolated incidents that are few and far between, and then sensationalized by the press.  But I also felt in my heart that the problem was bigger than anyone knew, and so we pressed on and built a home for the most vulnerable children in Swaziland – newborn babies.

By January 2012 the El Roi home for abandoned babies was ready to open. Walls painted, furniture built, cupboards stocked and staff hired and trained.  And then we waited and prayed.  On March 1^st 2012 we received our first baby and his name is Joshua.  As of December 13^th the El Roi baby home is home to 22 babies who have been dumped in pit latrines, left on the side of the road, in bus stops or somehow survived after multiple attempts by their mothers to abort them. 

On Thursday I was heading to town to take Chloe to the doctor. She came home from a few days beach vacation in Mozambique with friends and was very sick.  Based on the extreme headache, fever and intestinal issues we wondered if it might be malaria (we don’t have malaria where we are in Swaziland, but there is a nasty strain of it in Mozambique)?  Thankfully her tests came back negative and she is feeling better now.  But during our drive I got a call that there was a set of twins that needed to come to us and they were in the Social Welfare office in Manzini and were in a vehicle heading our way.  I told them I wasn’t at Project Canaan, but would come to them after Chloe’s appointment.

Nothing is simply in Swaziland so between almost running out of gas, a long wait at the clinic, car malfunction etc it was three hours before I was heading to the babies. By that time the Social Welfare folks were getting anxious and drove to meet us on the road.  We connected by cell phone and I pulled over on the side of the road and was met by an ambulance.  The ambulance had two small cots in the back, which were not strapped in.  There were a couple of dirty spare tires on the floor, which you had to step on to get to the cots.  On one of the cots was a very thin young woman with a mask over her mouth.  The woman was the mother of the babies and was dying from Tuberculosis.  Beside her lay the most beautiful twin baby girls I have ever seen.  I don’t know how the mother or babies were able to stay upright in the back of this vehicle with no straps or seats, but there they were. 

They say that Tuberculosis (TB) is HIV/AIDS “best friend”.  People who are HIV positive don’t die from that, they die from opportunistic infections that attack the body because the immune system has been damaged or reduced.  I have been told that 70% of the people of Swaziland have active or inactive Tuberculosis and it is highly infectious. 

The mother was 24 years old and this was her second set of twin girls (she also had a firstborn who was a boy).  She is HIV positive and not taking her Anti-retrovirals (ARV’s) for reasons I could not understand.  She had been living alone in her small mud room with the twins and had a home-based care worker trying to care for her.  The other children were all living with the families of the respective fathers of the babies, but the father of these twins was not interested in his paternal responsibilities.  The babies were at high risk of getting infected with Tuberculosis and the mother was losing the battle, mainly because of her advanced HIV status.

I have blurred this woman's face for privacy reasons.

The healthcare worker told me the story of the young woman and said they were taking her to hospital as a “hospice” measure because she was too sick to stay at home.  She had explained to the mother who I was and what the El Roi baby home was and that we would care for her children.  I could only see the mother’s eyes because of her TB mask, but they were so very sad.  I wanted to comfort her so put on a mask myself and climbed up into the ambulance (truck) and stepped over the spare tires to speak with her.  I told her that Jesus loves her and her babies and He sees her pain and fear.  I asked her what the girl’s names were and both names meant “beautiful twin”. 

The healthcare worker passed me a piece of string and told me to tie it on to the firstborn so we knew who was who. But the twins are SO identical that even the mother couldn’t tell them apart.  She said that the smaller one was the firstborn, but it took some intense looking at both babies with only diapers on before we made our best guess as to who was who? 

Traffic was starting to get busy and cars were honking at us so it was time to take the babies and leave.  Thankfully Chloe was with me and we picked up Bailey Klee  (while the car was malfunctioning) so I had two sets of hands to hold these precious children.  Not quite sure what I would have done without them??

I gave the mother a hug and held her babies for her to kiss and say goodbye before handing each one down to the girls.  Her eyes filled with tears as she saw them be passed along.  I hugged her again and encouraged her to take her ARV’s so that she may live.  She nodded and thanked me for taking good care of her children. 

James 1:27 in the bible says, “Religion that God our Father considers pure and faultless is this; to care for orphans and widows in distress and keep oneself from being polluted by the world.“  This scripture has never been so real to me as it was on Thursday, standing on the side of a busy road, taking twins from a dying mother. 

The El Roi baby home has monthly funding for these 22 babies, thanks to people like you who read this blog and want to be a part of the solution. I honestly don’t know what I am going to do when the next call comes in and I have to say “no”.  There are 400+ people who read this blog every week. If everyone gave something each month we wouldn’t have to turn any baby in distress away. 

Ian, Chloe and I are driving to South Africa this morning to pick up my firstborn from the airport in Johannesburg. I can’t wait to see Spencer and have him home for Christmas.  I can hardly fathom that he is 18-years old.  It seems like just yesterday that he was a little babe in arms.  I can’t imagine being so sick that I would ever give him away or so desperate that I would drop him in a filthy pit latrine.

As we prepare for this Christmas season let us all remember that the reason for the season is the birth of a baby.  That baby was and is our Lord and Savior Jesus Christ.

Live from Swaziland… I am excited to celebrate this season with my babies.

Janine