Heart Failure, Part I

Herlyn is a 3-and-a-half-year-old boy from Colonia Pampojia, one of the small communities around the Lake. I heard about him for the first time around November of last year when Shom met him on a weight surveilance day and, after hearing a very loud murmur and finding stigmata of heart failure, asked the mother and health promoters if he’d ever received any treatment. Mom remembered that the boy had had several studies done in the past and that a volunteer nurse had be involved but reported that nothing came of it. I asked around about the child to try to get more information: Vicente, Dominga, and Rafael were all unsure what the story was and it was left that I’d need to check with JA, the health promoter who purportedly arranges exams and labs for patients after visiting doctors leave. To put it bluntly, JA is nearly impossible to communicate with. He avoids all volunteers who associate with his sworn enemy, Vicente, to the point that he will turn around in the street and walk the other way or refuse to respond when greeted directly and he consistently is dishonest about what work he has done or is doing. So, because I find my attempts to communicate with JA fruitless, I focused on other issues. Until….

I met the mom and little boy in February at another weight check. Herlyn was one in a long line of malnourished kids, weighing in at just 10kg. On nutrition days, after others have measured the kids, the moms see me for their kids’ acute complaints and feedback on wt gain, or lack their of. Herlyn’s mom told me he’d had painful swellings in his groin area and I took a hernia history before examining him and gave her some information about getting on a list for hernia repair with the visting doctors. Not until after I’d gone through the talk about hernias did she tell me that the reason he hadn’t had his hernias repaired with the recent visiting surgical teams was that someone was concerned about a murmur. I listed to him thinking this would be some innocent murmur I could reassure her about and and then return to the importance of getting those hernias repaired. Instead he had a loud, harsh murmur through a barrel-shaped bounding chest wall and a big liver. Immediately it registered that this was the child I had heard about. I spent a long time with mom, trying to piece together the history. (I had, in the meantime, gathered a bit more information about him: apparently mom had previously said she did have the written summary of the boy's prior testing but she’d just need to look for it and it was also rumored that a NP had been able to get Herlyn set up for surgery but on the day he needed to go and the van came to pick him up, his mom wouldn’t let him go). Mom gave me, one by one, a lot of reasons for why she hadn’t pursued treatment for him including 1) They say that almost all the Mayan kids who get heart surgery in Guatemala City die 2) They say that the doctors are just practicing on Mayan kids and don’t care if they die; maybe they want their organs 3) A local doctor said he’d get better if he took vitamins 4) They say that, while you are initially told the surgery is free, they will actually make you pay 30,000 Q ($4K) 5) He’s always sick so he can’t ever actually travel for treatment. It was so frustrating hearing all these reasons (where were these rumors coming from and did people realize how much damage they were doing by propogating these; how could a doctor really tell the family he would get better or did the doctor never say that but the family is just externalizing the blame for not treating their child or did they misunderstand the doctor; what if the boy dies during surgery -- as he certainly could --, will all these fears just be confirmed?). I tried to be as sensitive, supportive, and non-blaming as possible as I talked with the mom about just having enough faith to let us get him an ECHO (no commitment to surgery; and I’d come and make sure they didn’t get stuck with a bill) and I gave her my cellphone number and volunteered to come any evening to the house to talk with the dad, in case he was the sticking point (commonly the case). I did tell her I thought the boy may only have a few years left to live if she didn’t do something to help him. I didn’t hear from her.

I learned (I think) in my first months here, that one can’t (or shouldn’t) force a parent to do something for their child that they aren’t themselves fighting for. If you do, all bad outcomes were caused by you (and it’s not the blame that’s the problem, it’s that you’ve then cursed them to a life of feeling wronged - severely - by the white man once again and made them all that much less likely to trust future medical care) and you will need to take full responsibility for the care from start to finish or it won’t happen (and that energy you put in could be better directed towards the many families who are begging for your help). So, I decided not to pursue evaluation and definitive treatment for this child.

But, Paul Wise came into town and said he thought I should just (“just”, as you can imagine is never as simple as “just” implies) set up an appointment at UNICAR (a sliding-scale charitable cardiac clinic in Guatemala City - 3.5 hours away), arrange a ride ($85), and let the parents know it was all in place and that I’d be by for them on the given day and hope they showed. I decided he was probably right that I should fight harder for this particular child, though I was not particularly inspired to set all this up and have it not come through as has been my predominant experience here.

I couldn’t find any contact information for UNICAR on the web but, serendipitously, my Guatemalan friend, Emilio, just got a job as a research assistant there and I asked him if he could help us get an appointment (apologizing in advance for a possible no-show). He surprised me by immediately setting one up for just a week later. Yikes, how was I going to convince the family that quickly and get a ride together?! Also, the only option for appointments was 8am. That is tough when you realize you would need to leave by 3am or 4am by chicken bus and everyone (backed by the daily news reports) warns that you should never be on a chicken bus when it’s dark out given the very frequent night assaults on the buses.

With the help of Rosa, the health promoter in Pampojila, I set up an appointment to talk with the family one evening about pursuing an ECHO. The reunion was a bit tense. Dad wouldn’t look at me when I walked in and, once we started talking, often cut me off brusquely to correct me or add something. That’s why it caught me totally off-guard when after he gave us a long summary of the history (months of tedious, seemingly unnecessarily repetitive testing for his boy over the first 8 months of his life, loss of a job and government insurance, mixed messages from doctors about his condition and the safety of heart surgery), he thanked me for caring and for offering them this second chance to seek definitive care for Herlyn. He said he’d grown increasingly attached to his son, he guessed machines and outcomes were better now, he’d watched two children in the community thrive after heart surgeries, and he felt my persistence and a recent visit by a child sponsorship organization might be messages that this was time to act.

I told him I had to be completely honest with him that the boy might not be able to have surgery even after all this effort. And he said he needed to be completely honest with me that he had no money to put into this ("plata no hay"). Mom expressed concern about what would happen when I left in June. I told them I wasn’t sure and couldn’t make promises because I didn’t even know what his heart condition, recommended treatment, and prognosis were but that I would do what I could to help their support continue through local doctors, health promoters, and Paul Wise. Mom mentioned the boy currently had a fever and dysentery. And mom was due to deliver her next baby in just a week. She couldn’t travel. And dad was working. Dad surprised me once again by saying he would travel with the boy and me (for a dad to take a child to a medical visit -- or anything else for that matter -- alone is something I haven’t seen but once or twice this year) and cancel work for Friday if I could assure him we’d be going. I left treatment for the boy and promised to figure out the ride situation and come back to see them on Thursday with details (this was Tues, appt was Fri; they don’t have a phone).

I left very excited. I couldn’t believe dad gave me the go-ahead. Rosa suggested I ask the Parrochia for an ambulance transport. It sounded like a great idea at first but that would tie it up all day and could actually cause someone harm so I re-thought. I didn’t want to ask the Parrochia for a car because they are resistent to direct gringo intervention with local families in need. I thought they might be unhappy that I was taking the reins on this. I decided to try the hospital director (Parrochia, yes, but one-step removed). He didn’t miss a beat. He made a quick call and the ride was set for Friday at 3am. Unreal!

On Thursday, I went back to Pampojila to confirm with the dad about the trip, hoping that my visiting them that night before would make it just that much more likely that they would show in the morning. Herlyn was sick with a fever (again) and had slept all day. They were worried about traveling with him. I thought I was going to lose them. I said, "we need to travel tomorrow even if he has a fever. I will bring my exam kit and medications and I will treat him on the road if he needs it when I see him in the morning". They nodded.

I was all nerves last night thinking about today and wondering if they would show and, if so, how it would go at UNICAR. I made us sandwiches for breakfast and lunch, got some meds together to treat whatever I might find on his exam, and set out my things for a quick departure in the morning.

When we took off at 3am, it was pitch black. We pulled up to the Colonia and waited. I had told them 3:30am so we had some time to sit and stare and worry. At 3:30, I started anxiously looking at my watch--it was dead still in the town. At 3:35, dogs started barking. Could it be that they were coming? A shadow of the dad and his sleeping cargo appeared. I was elated (not exaggerating).

I offered to hold the boy in the back seat so he could sleep (I selfishly just wanted to get to cuddle him and I got to do that all the way to Guate. He was scared of me at first but then held my hand and snuggled up against the cold). We got to UNICAR at 6:30am and took our seat.

(Now, I have to go to bed ... To Be Continued)