Wednesday, May 26, 2010
Monday, May 24, 2010
I don't know what to say.
"Why?" seems like a silly question.
There is no answer other than the lack of resources and the cold, arbitrary consistency of threats to this country's most vulnerable children. The two go hand in hand. It is because of the lack of resources that the threats are so many, so suddenly serious and so deadly. They make themselves known when you least expect it, hiding around the corner in the form of some illness or another, something you hadn't thought of until BAM…there it is, and there a baby is no more, and there you are left to wonder, "Why?" -- in a world without an answer.
This weekend hit TTL hard.
On Saturday, Nthabiseng, the sweet and chunky little girl who had been here since December, who seemed so healthy, who had almost made a full recovery and was probably going home soon, died.
I came home to the shocking news after being out of Mokhotlong. The croup had come on fast.
Croup is an "acute inflammation and obstruction of the respiratory tract, involving the larynx and the main air passages," that is usually caused by a viral infection with bacterial secondary infections likely to occur as well, according to the Oxford Medical Dictionary.
Last week, Nthabiseng had a cough that didn't seem too serious, but which we had checked by a Baylor doctor on Friday. It was then that we started Nthabiseng on medication and an inhaler for the croup. It was only the next day that she stopped breathing suddenly in the middle of the day. Kirsten attempted CPR, then rushed Nthabiseng to the hospital with one of the bo'me. By the time a doctor arrived it was too late.
Then on Sunday, the day after Nthabiseng's death, Kirsten and I were both in the office when Nthabeleng arrived in her church clothes, distraught.
She had just received a call from the family that took Thapelo and Mathapelo home on May 12. The twins were TTL's miracle babies, who survived premature births in August and who just left us after spending their entire lives at TTL.
Thapelo had gone home with measles, so at first I thought something was wrong with him.
"No," Nthabeleng said. "Mathapelo. It's Mathapelo."
The information we have isn't clear, but apparently Mathapelo had a bout with diarrhea and died.
The news, on top of losing Nthabiseng the day before, was crushing. Two babies who we thought were going to make it are now gone. The entire episode is made worse by the fact that two other babies, Nthati and Ntseliseng, are also breathing with extreme difficulty and are also being treated for croup. Nthati is also being treated for pneumonia. I'm scared for them both. We're doing all we can here, but it doesn't seem like it's enough.
I think we're all still working through both deaths in our heads. Before today, I was in my head a lot and was confused about how best to move on…
Then today, I drove on outreach with Matello to a rural village that the hospital had referred us to, to find another set of twins. Matello and I drove as far as we could along the mountainous, rural road, then hiked the rest of the way -- straight up a mountain, over the top, and then around the two twisting ridges to a distant village that no roads reach.
There we found the twins, Bohlokoa and Bohloeki. They are four months old and are smaller than many new-borns. They are now the newest residents of the TTL safe home.
They are there along with Lipuo, who I wrote about last week, Karabo, another little girl who just arrived, and Selloane, another new safe home resident and the same little girl who I wrote about finding my first week in Lesotho. Selloane became a client of TTL way back then, when we found her with her grandmother and brought her back to the Mokhotlong Hospital, but is currently not doing well and is now in the safe-home. She came when I was in Maseru at the end of last week, and I hadn't known she was here until this afternoon, when I got back with the twins and started helping around the playroom as they got bathed. (The twins have scabies -- something I also wrote about dealing with not long ago. The last experience helped this time around.)
That puts our total number in the safe home at 8, double what it was not long ago.
The deaths and the still-present threat and the new arrivals is all a lot to wrap your head around. But considering it all, together, is just what I needed to do in order to figure out that question in my head: What's the best way to move on from all this?
The best way is to keep going, to keep finding kids in trouble. The new twins being here doesn't mean that Thapelo will have his sister back. But it means a lot.
There is no real, sufficient answer to why Nthabiseng and Mathapelo died. In my mind, there never will be.
But the answer to why TTL does what it does is still crystal clear. In fact, it's clearer than ever.
Friday, May 14, 2010
In the last few weeks, we've seen a big turnover in the safe home.
Lots of critically ill and malnourished babies recovered here at TTL from all sorts of problems and ailments and nutritional deficits, and became healthy enough to return home, including Seithati, Mathapelo and Thapelo.
Sending babies home is our greatest record of triumph, and a low number of babies here isn't necessarily a bad thing.
Still, while our outreach initiatives and referral systems are extensive, we know there are always sick and malnourished kids to find.
Just this morning I was thinking, "Wow. We only have four babies in the safe home."
Then, this afternoon, the tide turned, as it always does, and our number increased again, with little Lipuo, a 10-month-old girl from the St. Theresa area of Thaba Tseka.
Our Thaba Tseka outreach team just arrived with her. She's super cute, but super small.
Her bukana tells her story:
She was born in July to an HIV-positive mother, making her what they call an "exposed baby."
Good news is her mother had PMTCT help, and in February, when Lipuo's DNA PCR test for HIV came back negative, she weighed 6 kg and was "well appearing."
Then in April, she weighed 5.7 kg. She'd lost weight.
On May 5, she was vomiting, coughing, had a fever and oral thrush.
Today, after the bo m'e gave her a bath, they weighed her themselves: The scale read 4.5 kg. She seems like she has recovered from her illnesses, but she's still losing weight rapidly.
I'm hoping a good feeding schedule and some love and attention will do wonders for Lipuo, and that soon enough, she'll be another one of our happy babies well enough to go home.
Wednesday, May 12, 2010
There's an outbreak occurring in the Mokhotlong district right now.
This is a developing-country reality -- the virus only occurs in tiny numbers in developed countries like the United States, because of vaccinations -- and a far worse reality in a country where lots of infants are HIV-positive.
According to the "HIV Curriculum" of the Baylor International Pediatric AIDS Initiative, a partner of TTL's in Lesotho, "HIV-infected children have an increased risk of developing severe complications when infected with measles. A review of reported cases of measles infections in children with HIV indicates a 40 percent death rate."
"Death is primarily due to pneumonia or secondary bacterial infections," according to the Nelson Textbook of Pediatrics.
I bring this up now because we just found out yesterday that one of the babies in the safe-home, Thapelo, has measles. He's one of the twins who came to TTL at the end of August extremely premature, whose mother died in childbirth and who the TTL caregivers miraculously kept alive without an incubator by using heaters and blankets.
Thapelo and his twin sister, Mathapelo, are basically miracle babies, and are beautiful and -- generally -- healthy. They have lived at TTL their whole lives, and are finally scheduled to head home to members of their extended family this afternoon -- a logistical triumph on TTL's part in its own right. And now Thapelo has measles.
He looks miserable and stares back at you with a look that says, "What's going on and why do I feel like this?" He has socks on his hands to prevent him from scratching himself. Luckily, he's not HIV-positive, and should be OK. Basically, the rash and fever just have to run their course. Naturally, we have him isolated from the rest of the babies, and his family members who are coming to get him today seem like great people who will be able to take care of him well.
Thapelo and Mathapelo being reunited with their family is a fantastic, amazing, never-seemed-possible, miracle-story moment.
Still, we are worried about Thapelo's measles spreading around the safe home. Namely, HIV-positive Ntseliseng, who looks much better than she did when she first arrived emaciated and with scabies last month, doesn't have a medical history we are aware of, as she arrived with a new bukana that doesn't date back very far, so we don't know if she had a vaccination or not.
M'e Mamosa took her to the hospital this morning and got her vaccinated, on the advice of a Baylor doctor and regular TTL contact. Hopefully we acted fast enough, and Ntseliseng won't have to face measles in her already fragile state. She still seemed OK this afternoon.
Hopefully Thapelo has a strong recovery, and none of the other babies get measles. And hopefully, somehow, Mokhotlong district -- and the entire country -- is able to start turning the curve, getting more kids vaccinated.
But that's a tall order, as I saw today. The entire outbreak was put in perspective for me this morning, when I drove out to a rural village on a Village Health Worker Program site visit with outreach. We weighed and measured a ton of kids, basically using the gathering to look for kids in need of TTL's services and chronicle the progress of the others.
Looking through all of the kids bukanas, I was hyper-sensitive to the measles issue and honed in on the spot in the bukanas where the measles vaccination is recorded. The vaccination is given at 9 months here, and about half of the kids of that age had never had the vaccination.
There it was in my face. The reality behind the outbreak. Sometimes parents just don't take their child to the clinic, sometimes they can't make it there for whatever reason, and sometimes they do make the trek to the clinic and the clinic is out of the vaccine. It's a nasty reality.
It should't be this way. We shouldn't have to worry about measles, much less a measles outbreak. Babies shouldn't have to deal with measles. There's a way to avoid it. But here we are.
Friday, May 7, 2010
I had plastic gloves on my hands and an uncontrollable grimace on my face, one borne of disgust for what had been allowed to happen to Nketeleng and of the terrible sadness I felt as I watched her whimper in distress while one of the bo'me cleaned her. The whimper was more devastating than any cry, any scream, for the little girl in front of me was, in fact, silently writhing in pain. She was only tearless and silent for the fact that a horrific, unchecked outbreak of herpes simplex had turned much of her face into a burning pattern of raw skin, scabs and bloody lesions, and allowing tears to fall or opening her mouth to release the full vocalization of her pain would have caused just another dose of that same pain.
Tragically, she'd been discharged from a distant hospital only a week ago, for some unknown and terrible reason. She belonged in a hospital, but for what time it was, we knew the local hospital here would have no doctor to respond to her even if we showed up, so she was ours for the night. Kirsten and I scoured our medical literature here and came to the correct conclusions, both about the herpes -- a common cutaneous manifestation of HIV -- and the Karposi's Sarcoma lesions on the rest of her body.
We noted from her bukana that she'd been prescribed acyclovire cream, but that it was out. Kirsten also said Nketeleng should be on an acyclovire IV or be receiving acyclovire pills, as the infection was far more systemic than a topical cream could treat. We cursed the confusion surrounding her treatment, a treatment so clearly wrong.
The medical assessment was helpful for me in that in made me stay in the moment, instead of shrink away from the horrible reality of it all.
"You poor girl," I found myself saying repeatedly. She lay there and looked up at me, as the heater in the changing room continued pumping more hot air out and the bo'me spoke to each other softly as they tried to make her more comfortable.
Last night, after I'd left the safe house, I started to think about all the logistical nightmares that must have contributed to Nketeleng's not getting the treatment she needed, and before her condition became so bad. The remoteness of her village, the distance to the clinic or hospital, the family dynamics, the lack of resources...
This morning, Kirsten and our safe home supervisor, M'e Mamosa, took Nketeleng to the hospital, where the district medical officer confirmed our assessments. The pharmacy there had acyclovire pills, but they didn't have the IV. Nketeleng's mother arrived at the hospital to be with her daughter, and we promised we would check back this afternoon.
Just minutes ago, Kirsten arrived back from the hospital with Matello, our outreach supervisor. Nketeleng just passed away.
I feel like a broken record, but I wish we'd found her sooner. I wish she hadn't had to go through what she went through during her short time in this world. I wish there weren't other babies out there dealing with what she dealt with, but I know there are.
The only reassuring part is that I know we'll continue searching for them, and there will be times when we reach them in time, and there will be happy endings and babies brought back to health and babies who get to have their futures.
It doesn't make me forget Nketeleng's face, but it reminds me why I'm here.
Monday, May 3, 2010
Today was a happy day, but also a bittersweet one.
Today, three-year-old Seithati went home.
This means the tiny, malnourished little girl we found in February progressed so far at TTL in the last three months -- she went from just 13 pounds to more than 20 pounds -- that she was healthy and strong enough to go back to her village and receive continuing TTL support from there. She was reunited with her grandmother and the rest of her family this afternoon.
This morning, she danced in the play room when she heard the news she was headed home, excited for the reunion. Again, it was a happy day.
Still, at the same time, Seithati's departure also means the safe home has lost its most gregarious tenant. Seithati is undeniably a character, one who brightened the room at any given moment with her easy laugh, warm smile and quirky habits.
She was closest in age to Nteboheng, who is five, and the two girls had developed a strong bond during their time here together. Today, Nteboheng lost her closest buddy, the one who had comforted her when she first arrived. For Nteboheng, today was a sad day, and she cried much of the morning.
And, while I am fully aware of the success Seithati's departure indicates and the great work TTL did for her, I couldn't help but feel a bit of sadness at her departure as well.
It was my first week here, on just my second outreach trip, that we found Seithati at a rural clinic. Our starts here at TTL were only a few days apart, our overall time here has essentially coincided, and for that we had a special connection.
My name is a tricky one for young Basotho to pronounce, and Seithati called me what sounded like "Ntate Kebeny." I'm not sure where she got the last syllable, but she seemed to like it and wouldn't drop it despite corrections from Nteboheng.
Whenever I went into the playroom, Seithati would catch my eye, laugh and walk over to me with her arms in the air. I'd pick her up, and she'd say her version of my name as she wrapped her small fingers around one of my own and smiled. I'd put her down again and we'd start some sort of game where I would act strange and she would squeal with laughter.
When it was finally time for her to go this morning, you could tell she was starting to get nervous, but in her sweet little way, she was also clearly making an effort to smile, as if she were trying to comfort all the adults around her. And in a way, at least for me, it worked...
I handed her over to Matello, who was waiting in the outreach car, and waved.
"Bye-bye," I said.
"Bye-bye," Seithati said back, with her own little wave.
When she got home, according to our outreach team, her grandmother cried at seeing her -- overcome by emotion at how healthy and beautiful her little granddaughter looked. In classic Seithati fashion, my little buddy apparently looked around at the adults and asked everyone what all the commotion was about.
I'm so happy we found her back in February. I'm happy she has thrived, and that we will continue to support her. I hope her future is as bright as her potential. I'm glad TTL will continue finding children like Seithati, who we can help out of malnutrition or illness and toward the future they deserve.
I'm also happy my life overlapped with Seithati's for the short time it did. In her special way, she taught me something about smiling no matter what, despite daunting unfamiliarity, and in the face of an uncertain future -- an invaluable lesson to learn.