The Girl Who Must Live: An Unsung Heroine

We all love a hero. Defiant, powerful, winning the battle in the end after overcoming great hardship at great cost. I have met a new kind of hero. She was so much more impressive, but so easily overlooked. Disney endings hollow compared to her extravagant enduring in the face of inevitability.

The day I arrive in Haiti everyone is talking about how Nadege (name replaced to protect identity) has completed and passed her final exams for high school. It is possible; however it takes determination, money, and time and most do not. I am impressed by this teenage girl I do not know. The second thing I learn is that she is “pa anfom” (not in good shape) so I tag along with a local Ti Kay agent to check on her at home. Ti Kay is an imaginitive organization treating critical tuberculosis (TB) patients in the capitol of Haiti. En route they inform me that Nadege is a former TB patient treated and cured at their clinic. Her lungs retained permanent, inflexible scarring as patients generally don’t seek treatment until they are in an advanced stage.

Port Au Prince

It is a long trip. Nadege lives at the peak of the mountain that the stadium-like capitol city of Port-au-Prince sprawls up. We arrive in front of a few simple, narrow, 2-story cement block buildings and I focus in on a thin woman perched at the bottom of steep stairs leading into the dark building. When she learns we are there for her, Nadege, stands and before I can stop her, her pathetic body steadfastly climbs 12 of the steepest stairs I’ve ever beheld. Her family is better off than most. Her mother sells food from the bottom of their stairs, still, this is certainly no castle. At the top are 2 cinderblock rooms about 6x8 with sheets hanging in door sized holes. Little eyes and little feet peak around the furthest sheet watching the “blan” (foreigner). I follow Nadege into the nearer sheet entrance and find a full sized bed engulfing the room with shoes, pots and pans, and other assortments of her family’s life scattered around it.

I finally get to study her face and I cannot believe she is a teenager. Her frame is petite. So thin that you cannot help but think of the skeleton hinted at in every angle. She has ancient eyes. Dark liquid pools drowning in exhaustion and grim enduring. They remind me of the eyes of a dying doe from my childhood. Before they pulled me away I looked into its dark eyes above its flared nostrils and panting sides and saw the suffering, patience, and involuntary bravery of its insistent survival despite the inevitable. For every one of my breaths Nadege takes 4 shallow gasps requiring extra effort as she forces air into her scarred lungs. The acidity of her blood is affected by such a breathing rate; I wonder how she has managed to compensate for it. The pulse ox we have slipped onto her finger flashes her oxygen saturation as 49% in red lights. (Levels generally not considered compatible with life.) Her heartbeat is weak and racing when I palpate the pulse in her wrist. None of this impacts me quite like the sound coming through my stethoscope when I place it on her painfully thin back. My heart drops in my chest and wonder appears in my eyes; it is a sound as shocking as death’s silence. It is the tortured sound of air trying to reach impossible places. It is the sound of unimaginable damage and impressive effort. Now I understand the exhausted enduring in her gaze. It turns out Nadege has been this way for 3 weeks. She took her finals in this oxygen-deprived condition and has been climbing that mountain, too. The accomplishment of her degree takes on superhuman levels. This girl should be dead; not graduating.

Things move fast, by Haitian standards. We deliver a donated oxygen concentrator and one of our most committed Haitian agents (a former patient intimate with being unable to breathe) splits off to find a generator amongst the sundry things sold on the streets. Over the next few days Haitian agents struggle to convince Nadege’s family that she requires oxygen indefinitely to avoid further permanent lung damage. I feel for the family. This means a generator sounding like a lawnmower is puffing fumes into their poorly ventilated box home. An essential exchange for a life to continue. The payoff is seeing the bright teenager behind those aged eyes surface as oxygen begins to have its way. Local agents continue home visits and update me through our long distance telemedicine program. All that enduring, not to mention all that work for an education, cannot be for nothing. She may not be the obvious hero, but no one is more deserving of getting the crack at life most take for granted. She lives a life where one cannot dream past the given moment, but despite what disease and circumstance have dealt her Nadege is setting herself up for a future. If there is any justice in the world she must succeed.

A month later they inform me Nadege has been hospitalized. She has no new infection and nothing more than what we were already doing for her free of charge at home is being offered. However, Nadege is co-infected with HIV, (this is common as HIV increases your risk of contracting TB). So Nadege had to go to the local clinic to pick up her HIV meds, and they sent her to the hospital. For no reason. This happens far too frequently. Generally, we try to pick up or provide patient’s HIV meds for them so they are not coerced into unnecessary, expensive and inadequate care at a facility not equipped or trained to handle critical TB patients. Ti Kay was indisputably the only facility in the capitol equipped to handle critical TB patients needs. Not to mention, the only site accessible to those without the ability to afford advanced care. With our clinic closed until we can raise $400,000 to re-open at our new location, new patients cannot find us. Thousands are going untreated and have no hope. It also means we are powerless to prevent these patient hijackings that so often end tragically. It even limits our ability to provide care for our current patients as we must do all treatments in patients’ homes instead of a central location designed for treatment and around the clock monitoring. However, we have created an unprecedentedly imaginative outpatient system and thus generally remain our patients’ best options. However, Nadege’s care is taken from us. I check my phone incessantly for any updates but none come aside from “Nadege is at hospital” for days. Then one day I get a new message.

“I’m sorry Nadege is dead.”

Like being woken with a wave of cold salt water crashing over me and down my gasping throat. I am suspended in disbelief and horror. I want to know why and how and what we could have done, but none of that really matters. After all, she is dead.

I imagine she had that look of animal survival again towards the end, but I can’t imagine that look and steady low light going out. She endured so much. She had hardship yet survived and fought harder than anyone could predict possible. She deserved to exist. She was the girl who must live…and she died. The inequality is suffocating. She didn’t need to die, over and over again she didn’t need to. She died in a hospital on oxygen from lack of it being turned up enough; a problem that could have been avoided. She lived where death by a curable disease is a side effect of poverty and instability. She and thousands of others died for lack of a mere $400,000 which could re-open the clinic and save them. Nadege is dead. She is at peace finally, yet another ghost to motivate the fight for the flickering lights that needn’t, mustn’t, be put out. No light is more desperate and precious than that final survival flame and needless extinguishing is an abomination we cannot ignore without risking becoming an abomination to ourselves.

Some things can’t be made right, but that is no excuse not to lend our strength and resources to the overlooked as they fight unmerited defeat. We owe it to the heroic Nadege to see this through with hope despite possible defeat and prevailing circumstances.

To learn more visit: https://tikayhaiti.org

Want to fight this particular battle with us?

  • We are currently arranging and carrying out a campaign to re-open the clinic, arrange for it to sustain itself, and stay open indefinitely. If you want to get involved financially visit https://tikayhaiti.org/donate/ Anything helps, but reoccurring donations (monthly or quarterly) are especially helpful as it helps us in the long term with providing accessible and essential care to those without options.
  • We are running a long-distance telemedicine patient monitoring program in order to treat patients in their homes. If you are medically trained (MD, RN, paramedic, etc.) and want to help with patient care (from your home) please contact me: adillon.rn@gmail.com
  • Have skills? We could probably use them, from photography to accounting. Check out the “Volunteer” tab at https://tikayhaiti.org/ or email: tikayvolunteer@gmail.com